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Newsletter March 2003
In This Issue
- President's Message
- Welfare Update
- Sexuality and Intimacy
- Research Update
- Media Release
- Thoughts on a Negative Test Result
- Young People in Nursing Homes
- Fundraising
- For Your Diary
Dear Friends,
We are once again at the start of another year. The program for 2003 was drawn up in the latter months of last year and we really do have a very full agenda, both in the welfare department and fundraising.
Several new initiatives which were trialed last year have been included in the welfare program. Not all may suit your special needs, however if you are offered this type of support (carers' respite, respite holidays for clients etc.), please carefully consider the benefits these types of activities provide.
Likewise we do need your participation in the fundraising program, so please encourage your family and friends to make contact with the office for details of upcoming fundraising events.
Some changes have been made to the way in which we are providing Welfare support in Queensland. From early this year Welfare staff members have taken on Case Management and each staff member is responsible for specific areas.
For example, Gwen will be working with families east of Carindale and Mt. Gravatt, the Sunshine Coast from Caloundra to Tewantin, Rockhampton, Mackay, Townsville and Charters Towers.
Jan's areas include the remainder of the Brisbane area, Redcliffe to Caboolture, Toowoomba/Kingaroy area and Bundaberg to Tin Can Bay.
Kellie's areas are the Gold Coast, Ipswich, Logan/Beenleigh area and Cairns.
These are the areas where we have contact with families dealing with Huntington's Disease. If you are not living in any of the mentioned locations, just contact the office if and when you need assistance and we will indicate who is your Welfare Officer.
We will attempt to roster one of the Welfare staff to work at the office for the majority of the working week. Your issues will be addressed by that person, and any messages or actions will be attended to by the relevant Welfare Officer. We are interested in your feedback to these changes and are happy to discuss them with you.
The Joint Meeting of the IHA and the World Federation of Neurology will be held in Toronto, Canada from the 16th to 21st August, 2003. At the January Management Committee Meeting it was decided that Gwen Pratten will represent the Association at the Joint Meeting. (See website)
The Association has been officially informed that we have been unsuccessful in gaining funding to establish a special HD Unit at Prince Charles Hospital. Now that we are aware of our position we will begin looking into other areas to attract funding and ongoing commitment from other established service providers.
Gerry Doyle, President
Information on AHDA National Body
As a follow-up from our December Newsletter I indicated I would keep you all up to date with details of the National Body. Gerry Doyle and I represented the Association at the National Meeting which was held in Melbourne in November. All States were represented. A very positive approach to some difficult issues was displayed by all delegates.
The National Body is at this stage a meeting of State representatives who tend to meet every 2 years to share ideas, elect office bearers and appoint delegates to the International HD Conference which is held every 2 years (alternate to our National Meeting).
Office bearers consist of a National Chairperson and a Secretary/Treasurer. The role of the Chairperson involves representing Australia at the IHA Conference, receiving and distributing relevant information such as research material and providing the "link" between States of any correspondence.
The Secretary/Treasurer was a new appointment at the November meeting and this person's role is to support the Chairperson in the normal way. The second delegate to the IHA is to be elected on a rotation basis.
The National Body is not incorporated and does not raise funds. A draft Constitution is currently being developed, and will be discussed in detail before any decisions are made.
Teleconferences will be held 2 to 3 times each year, and this should improve our communication.
Should you have any further questions regarding the function of the National Body, please feel free to contact me at the Brisbane Office.
Gwen Pratten, Welfare Coordinator
What is Sexuality?
The term sexuality refers to all those qualities which allow human beings to feel comfortable with their bodies, and to form a meaningful relationship with another person.
Sexuality is a part of human expression from before we are born until we die. We express it in different ways at different times in our lives, but it is always present. It is present in the deliciously sensuous feel of some fabrics against our body, in the lovely feeling of holding someone close, in the way we dress each day and the smells which our senses love.
In the past there were set ideas about the 'right' way for men and women to express their sexuality. Women didn't wear pants and men didn't cry. These days society is a lot more open about how we express ourselves. For example, it is OK to consider sexual relationships between:
· older people
· people of the same sex
· people with intellectual or physical disabilities
· people who are ill
We do not have to agree with these activities, but our society today allows a much more open expression of difference.
The things we learned as we grew up influence how we feel about our sexuality. If questions we asked were answered openly and honestly we probably feel pretty good about ourselves and our body.
However, if, each time we asked a question relating to our body we were laughed at, or told an untruthful answer, or sidetracked, or told off for talking about such things, we may well still feel unable to talk about these issues, and indeed, even feel there is something 'dirty' about such things.
This is not our parents fault. Many of them grew up in the post-Victorian era when even chair legs had to be dressed to avoid exciting men!
Like other areas of our lives, our sexuality may become routine, and time needs to be invested to keep it exciting. How long is it since someone ran a feather over your body? Have you tried chocolate body paint? What about giving each other a massage? Tried a slow dance by candlelight? It doesn't have to lead to anything, but it might.
Masturbation, either alone or together is an acceptable way of expressing our sexuality, though the taboos and prohibitions instilled by our parents have often inhibited people finding sexual relief in this way.
If it's been a very long time since you have been intimate together, and you would like to resume a physical relationship, take it easy! Take time to get to know each other again. Find out what gives your partner pleasure, and allow them to do the same for you. Penetrative sexual intercourse does not have to be the end result of an encounter, and indeed is often the least likely way women will reach orgasm.
The most important issue in any relationship is open and honest communication.
This is especially so if you are having difficulties in the area of sexuality. Can you find ways around the problems yourself? If not, where can you go for help? Your GP, who knows your medical history, is a good place to start, but if you, (or he/she), feel uncomfortable about this there are other options.
Family Planning Clinics have nurses and doctors who specialize in the area of sexuality and sexual problems. Sexual Health Clinics also have staff trained in this area. They don't just deal with sexually transmitted diseases! Your local library will have a section on health issues.
Health Books have published an excellent easy to read series of booklets relating to sexual health including:
· The Menopause
· The Penis; an Owners Manual
· Overcoming Impotence
· Loss of libido
· PMT
· Many of these books are available at your local bookstore or Newsagent, or you can order by mail from:
Health Books, 427/150 Queen Street, Woolahra, NSW 2025, ph (02) 3615244, fax (020 3607558). The books cost about $10.00 each.
Summary
Sexuality can be an important way of expressing our love and caring for each other. Our sexual needs and desires change over time, and there will be times when sexual intercourse is inappropriate or impossible. Penetrative sexual intercourse is not the only way of receiving and giving pleasure. We can still maintain a sense of intimacy in our relationship with our partner by the use of touch, a warm bath or shower together, speaking of our love and care for each other, sharing happy memories, a massage, a simple gift of hand picked flowers, cooking a favorite meal&&&&
Most people have problems with their relationships at some time. The worst thing we can do is ignore them. If you have any questions about the issues discussed above we are happy to talk to you. All discussions are completely confidential.
Remember, the best prescription for relationship problems is:
open and honest communication
Jan Hannah-Munster, February 2003
SAHA Treats HD Mice
Dramatic Improvement -
The drug is called SAHA (suberoylanilide hydrozamic acid) and the researchers "found that it dramatically improved movement impairment in a mouse model of Huntington's Disease," said Dr. Gillian P. Bates of King's College, London, UK.
Drug Looks Promising for Huntington's: Mouse Study By Keith Mulvihill
NEW YORK (Reuters Health) - An experimental drug appears to delay symptoms in mice with a condition similar to the degenerative brain disorder Huntington's Disease, scientists announced on Monday.
Such mice, which are genetically modified to develop symptoms similar to those of Huntington's in humans, "are the closest models that we have to the human disease," added Bates.
SAHA is in a class of drugs known as histone deacetylase (HDAC) inhibitors, according to the report in the February 3rd issue of the journal Proceedings of the National Academy of Sciences (news - web sites). Such inhibitors are aimed at the root cause of Huntington's Disease - the transcription of DNA into working proteins.
Huntington's Disease is a genetic disorder afflicting about 35,000 to 50,000 people in the United States. The disease is characterized by the death of brain cells, usually starting in middle age, leading to involuntary jerky movements, personality changes and mental deterioration. It is inherited through a mutated gene that produces an abnormally long version of a protein.
One effect of the faulty gene, explained Bates, is that it alters the extent to which other genes important for the function of brain cells are switched on. In most cases, the level at which these genes are switched on has been turned down.
"It could be compared to a rail network in which certain trains start to run at a reduced speed. The function of the whole network becomes affected," Bates told Reuters Health.
The precise molecular interactions that lead to genes being turned down is not yet understood, although many clues are emerging from research, according to Bates. So far, HDAC inhibitors have shown promise when used to treat laboratory-grown cells and fruit flies that share some of the same DNA transcription problems associated with Huntington's Disease.
In the new study, the drug was administered in water and appeared to readily cross the blood-brain barrier, which shields the brain from contact with body substances.
Typically, the genetically engineered mice develop severe movement problems at five to six weeks of age. Those treated with SAHA for three weeks had a delay in symptoms compared with mice given a placebo.
At 12 weeks of age, the treated mice performed as well as untreated mice at eight weeks of age. The drug did appear to be somewhat toxic, and mice did not gain weight at the same rate as placebo-treated mice.
"It is extremely exciting that one of these drugs is effective in the mice and this has provided the green light to further develop HDAC inhibitors for use in the clinic to treat Huntington's Disease (in people)", said Bates.
However, much more study is needed to determine if such drugs are safe and effective for humans.
"Our research into HDAC will continue on two fronts," noted Bates. "First, we aim to develop effective HDAC inhibitors that could eventually be used in the clinic as treatments for Huntington's Disease and in parallel to gain a better understanding of their mechanism of action."
Memorial Sloan-Kettering Cancer Center and Columbia University jointly hold the patents to SAHA and similar compounds, and license the drug to Aton Pharma Inc., which was founded by two of the study's co-authors.
Source: Proceedings of the National Academy of Sciences 2003: 10.1073/pnas.04378700100
29 January 2003 - Australian Neuroscience Society Conference, Adelaide.
Researchers focus on helping brain to repair itself from range of degenerative diseases.
Researchers have discovered the adult human brain contains stem cells which have the ability to multiply and repair the brain in a range of degenerative diseases that affect millions of people worldwide. They are now planning to extend their research to study the potential of adult stem cells to help the brain strengthen its defences against diseases such as Huntington's, Parkinson's, Alzheimer's and epilepsy.
The regenerative potential of the human brain was the focus of a keynote address today to the Australian Neuroscience Society Conference in Adelaide.
The conference has attracted medical leaders and researchers from around the world to probe new frontiers in human brain research and factors affecting sensation and perception, learning, memory, movement, sleep, stress and ageing.
Richard Faull, Professor of Anatomy at the University of Auckland School of Medicine, said groundbreaking research has shown clear evidence the human brain attempts to repair itself from disease.
"We believe it is possible to help the brain in this process by using a patient's own stem cells for tissue repair," he said.
"This would open the door to new opportunities to treat people with neurodegenerative diseases and stroke. By tapping into and genetically engineering the adult stem cells from the diseased adult brain, we would overcome major ethical, immunological and technical problems associated with the more controversial area of embryonic stem cell technology."
Professor Faull said the studies were supported by a very successful human brain donor program in New Zealand that allowed researchers to probe the degenerative processes associated with various diseases.
"What we have found in the diseased brains is that adult stem cells proliferate to form replacement neurons as well as other repair cells. By accessing these stem cells and introducing growth factors to generate new neurons, it may be possible to help the brain repair itself and for sufferers of neurodegenerative diseases to regain health and normal functions. There is still a lot of work to be done to understand the Genetic and chemical mysteries of the brain before this type of approach can be used to help patients. But there is reason for excitement about the potential of neuron replacement in the treatment of patients that suffer from neurodegenerative diseases."
The Australian Neuroscience Society Conference at the Adelaide Convention Centre will run from today (Wednesday) to Friday.
THOUGHTS ON A NEGATIVE TEST RESULT By Ron Cleveland
Ron recently tested negative for the HD gene. We asked him to write this essay since we believe he has a real gift for sharing honestly and eloquently his thoughts and emotions.
In the early hours of the morning, unable to sleep, the mind seems to go into overdrive, flooding one's senses with thought, memory, ideas for projects, a million things at once. An overwhelming sense of sadness overcame me as I thought to myself, "It has been Nine Days since I received my test results for Huntington's Disease". That result was "Negative". Okay! Why am I not giddy with laughter and unbounded joy? Why this sense of sadness and loss? I am truly ashamed of these thoughts that refuse to leave me in peace, I should be thankful that I have been spared a life filled with the horror of Huntington's Disease.
Maybe that's the problem; have I really been spared? Can I now walk away from my life in the shadow of this disease? Am I really so ungrateful? I won the coin toss! Why do I still feel the weight of this disease pressing down on me? A million questions and not one answer for the thousands of people all across the world who I know who have similar feelings after escaping a close association with a truly life threatening situation. I don't believe I am the only one feeling this. Something is not right here!!
So what now? Well I have heard attempts to describe this as something called "Survivor Guilt." I am a survivor, but why should I feel guilty? I refuse to put what I am feeling into a little envelope and stick a label on it that says "Survivor Guilt." Sorry!! but this is not it!!
Ask any man or woman that you meet, anywhere in the world this one question. "How do you define yourself as a human being?" When asked this question most everyone will include in their answer, "I would say I am good, caring, helpful, kind." A person always desires to see themselves in this light. No matter what other traits they may display, they wish to be seen in a good light; this is important to everyone. But the question here is this, "How many of us are given the chance or opportunity to really prove this to ourselves?" This is being given the chance to affirm who you are, to define your life to yourself, no one else matters, you need this to be finally at peace within your very being.
I have been told many times; never let HD define your life. I disagree. We need a definition for our life, no matter what that definition is; it dictates who we are, how we act, think, react with others, we are defined by our wealth, our profession, our beauty -- both physical and ethereal, and when our lives are affected by a disease as hideous as HD, then yes, we are defined by HD. As Caregivers we are consumed by the daily round the clock stress and worry of caring for our loved ones with no chance for respite. As a Phd (gene positive) we are overtaken eventually and become defined by HD.
And being at risk, the longer our association with the horror of HD, then the more deeply ingrained the definition. We don't escape for long, the dragon is always there, and each time we see another loved one falls prey to HD, the tighter we are bound. And finally after a life long struggle within ourselves, we come to that point where some of us decide to test, for what ever reason we use to justify this decision, because it is different with all of us. And when that moment comes and we are granted a reprieve, a negative test result, and we are overwhelmed at first with relief, then sadness, then confusion, and no understanding of the way we feel versus the way everyone says we should feel.
We are not free, because we have to be here for our loved ones who are forever under the sentence of HD, not because of guilt, but because to leave, to turn our backs on our loved ones is to give the lie to our life's definition, of good, caring, supportive. We have been dismissed and challenged to go or stay. I choose to stay because of my definition of who I am, not because of guilt because I tested negative. Getting a negative test result is not a declaration of freedom, it is one more challenge thrown at us by HD.
We are sad and confused yes, but we are only guilty of being human, of wanting to help. I feel as if in getting a negative test result somehow redefines me as a person, but I won't surrender my concept of who I am, so I will stay. This decision is mine to make, it comes from my heart, I understand it now as being part of My definition. I like it and I can live with it now.
So my advice to all who have tested negative, and feel depressed or not deserving of your result is: You have been challenged. You have been affirmed and given the freedom to move more freely in the battle against this monster. Your sword has been sharpened; lift up your chin and bear it proudly. We have been unencumbered so we may fight harder for our loved ones and friends. By being given a negative result, we must never feel as if we have betrayed our loved ones who must face this disease. Instead we can shout to all who remain untested, "Yes there is Hope!! The Dragon does not always win," and at the same time say to our loved ones, "We are here for you." We have been chosen to fight. Replace your doubt with grim determination. Affirm who you are.
Acknowledgement: HD Advocacy Centre by HD Families For HD Families www.hdac.org
Reprinted: "Gateway" November/December 2002 - AHDA (NSW) Inc.
On 2nd May 2002, a diverse group of 180 plus participants attended an historic National Summit for Young People In Nursing Homes in Melbourne. The event was called by the 'Young People In Nursing Homes Consortium', a group of individuals who are directly affected by the issue, both through their work and personal experiences. The six state Huntington's Associations were represented by National Chairperson, Anne Middleton from AHDA(SA & NT) and Jo Gatehouse from AHDA(Vic). The consortium had come together with the aim of seeking solutions to this problem, sharing in the frustration of an issue which has a history of always being 'someone else's responsibility'. The summit was able to reach agreement on a set of principles and actions, providing a pathway to tackling this seemingly intractable issue facing Australia. The following is taken from the report of the Melbourne summit.
Background
In 2001, a group of individuals in Victoria started formally organising to try to gain broader community awareness of the issue that affects all of us - the plight of young people who require a high level of care. The lead up to the Federal election in that year provided an opportunity to focus attention on the issue. The 'Young People In Nursing Homes (YPINH) Consortium' was developed as an identity for this group.
The YPINH Consortium built upon twenty years of lobbying across Australia to get resources to build more appropriate accommodation and provide ongoing staffing support for young people with high care needs. This group includes over 6000 young people across Australia under 65, who are currently living in aged care nursing homes and hostels. The number awaiting entry is not known, but includes young people in hospital and extended care wards, and those people with disabilities currently being cared for at home, but whose parents and carers are ageing and will be not able to continue to support them in the future.
Young people in nursing homes have a range of medical conditions and disabilities, including Acquired Brain Injury, Multiple Sclerosis, Parkinson's disease, Huntington's Disease, Motor Neurone Disease, congenital and developmental physical impairments, behaviour disorders and dependence on aids and augmentative equipment such as ventilators and tracheostomies. The common element is that they require 24-hour support, including (mostly) nursing care. They are all housed with people outside their age group, in facilities designed for palliative and end of life support, which are staffed by people trained or selected for their ability in geriatric care and support.
During the 2001 election campaign, the Consortium contacted ministers and opposition politicians who were responsible for disability and aged care services, along with those in the minor parties, and asked them to state what they would do about improving options for young people in nursing homes. It became notable that only the incumbent political party did not provide any new policy direction in this area. However, media interest in this campaign was high, and the issue gained significantly increased public attention in the lead up to the election.
Later in 2001, with the election result indicating no change of policy direction on this issue, the consortium met again, and decided that further work would be required from the community if there was to be any progress. Both State and Territory and Commonwealth levels of government continued to blame the other for the problem and declare each other to be responsible for a solution. The consortium decided to continue to find a way to enlist commitment from all levels of government, and develop a bi- partisan approach to the solution.
With the support of philanthropic trusts, some of which were already recording their interest through offers of capital funding for young people's accommodation, the National YPINH Summit - Creating a Pathway from Aged Care to Appropriate Care - was organised. The consortium's own capacity, as well as the support of other interested bodies, such as MS Australia, Melbourne Citymission, the Head Injury Council of Australia, Aged and Community Services Australia, Joint Solutions, InABility PossABllity, Action for Community Living, and the Transport Accident Commission, along with the contribution of a number of interested individuals, made it happen.
This issue of young people being trapped in nursing homes is common across all states and territories in Australia, where young people have continued to fill aged care beds instead of more appropriate accommodation. National interest in solutions to this issue remains high, with the summit bringing in representation across all states and territories and across the disability, aged care, advocacy and community sectors in Australia.
The National Young People in Nursing Homes Summit
The Young People In Nursing Homes Summit aimed to secure national support for a commitment to address the needs of young people in nursing homes, built into the Commonwealth State and Territory Disability Agreement. It brought together young people with disabilities, their families and carers, government representatives, politicians, and peak disability, advocacy and aged care organisations in order to seek agreement on the way forward.
The summit was organised by a small consortium, principally from Victoria but also including representatives from Western Australia and the ACT. It was seen as a first step in the formation of a national cross-sectoral campaign and was timed to coincide with the Commonwealth State and Territory Disability Agreement negotiations.
The consortium developed a Call for Action in the weeks leading up to the summit. It provides a set of principles and identifies short, medium and long-term actions to achieve the overall aim of creating a pathway from aged care to appropriate care.
These strategies are consistent with the principles already agreed to by the Australian Government and people through the Commonwealth Disability Services Act (1986) and similar legislation in each State and Territory. The summit was seeking agreement on actions to ensure that young people have choices about where they live, how they receive support and appropriate levels of care. The principles combined with the actions offered a reform agenda by which governments could honour their commitments to people with disabilities.
The plight of young people in nursing homes has been on the agenda for over two decades without resolution. Given the complexity of the situation and the multiplicity of stakeholders involved, the only way forward is for those with an interest in this issue to work together in partnership.
The consortium invited a wide range of people to come together to consider the call for action, believing that those present would have an ongoing contribution to make in finding the solution. It particularly sought the involvement of young people with disabilities and their families by offering to reimburse the full cost of participation in the summit. This strategy ensured that young people, their families and carers, made up over a quarter of the delegates. The summit was also a unique opportunity to bring together politicians, bureaucrats, policy bodies and service providers in both the aged care and disability sectors.
The interest in the summit from all quarters was extremely strong and the consortium had to turn people away in order to maintain focus on consideration and decision-making in response to the Call for Action.
Principles Underpinning the Summit -
All people in our society use a range of funded and unfunded infrastructure and direct supports. Young people in nursing homes require additional support to enable them to attain a quality of life commensurate with others in the community. These requirements include appropriate housing and support, rehabilitation, therapeutic services, support to access community life, advocacy services, respite, vocational support and information.
Citizenship - Young people in nursing homes are entitled to the same opportunities as others in the community to lead an active and fulfilled life in the settings of their choice.
Equity - Access to resources by young people in nursing homes must be equitable and based on assessed need, regardless of the level of support required or how the person sustained their injuries.
Quality of Life - Housing and support services for young people with high support and/or complex care needs should be the least restrictive possible, should be age and needs appropriate and established as their home.
Participation - Young people in nursing homes, their families and carers have the right to participate in decisions that affect their lives.
Format of the Summit -
In opening the summit, Lindsay McMillan, CEO of the Multiple Sclerosis Society, Victoria, welcomed those present and introduced the key tasks for the day. Anne Turley, CEO of Melbourne Citymission then spoke about the work which had gone into the preparation for the day, and particularly welcomed young people and their families. Mary Nolan, of InABility PossABllity, then spoke of the personal journey she and her family had embarked upon in supporting her 28-year-old son Christopher, who is currently a resident in a nursing home. Christopher has severe disabilities and requires a high level of care.
A panel of speakers representing the range of delegates then spoke to the call for action. They spoke from a range of perspectives, identifying the need for action on the lack of appropriate accommodation options for young people with high level care needs.
CALL FOR ACTION
Participants were asked to consider three key actions, and two structures which the YPINH Consortium had prepared. Critical to the success of the summit, was discussion and debate by participants during the day. This was facilitated through an operational structure of twenty tables of people mixed across sectors and layers of interest. Each table considered the proposals brought to the summit. The summit identified that there was a need for a unified approach as the basis for progress on the issue of Young People In Nursing Homes. Overwhelming support was gained from those attending for the Call for Action and it was endorsed with some minor amendments from the floor.
Additional Critical Issues Identified by Summit Participants -
In addition to this unified Call for Action, however, a number of key issues were identified by participants, which were recorded as critical to achieving progress on the issue.
Key additional themes critical to Young People In Nursing Homes:
In addition to providing overwhelming support for the proposed three actions, and the two national structures, the following suggestions were recorded during debate on the Call for Action. They represent ideas beyond the immediate scope of the Call for Action proposals, and provide additional ideas and options for follow-up. This list is a summary of documented points that were repeated by a number of tables, and indicates some of the breadth of topics that emerged repeatedly through discussion during the Summit.
1. An individualised approach to funding that reflects the variety of needs in the group requiring high-Ievel care. Flexibility in packages of care is needed to address needs.
2. The need for a new universal assessment tool, specifically designed to address young people's needs. Current Aged Care Assessments are not appropriate.
3. A whole of life approach is required to address the full spectrum of young people's needs, which include recreation, sexuality, community involvement and rehabilitation.
4. Local co-ordination of services is key to success.
5. Recognising that specialist learning is required to support young people's needs, skills training for workers with young people is needed.
6. Development of accommodation options that are flexible and purpose built.
7. Specific attention IS required for those young people currently living at home or in the community, and who will require supported accommodation, due to ageing parents, progressive disorders, etc. Need to plan for this group.
8. Support for changing needs, due to rehabilitation/improvements, and the deterioration of conditions - the 'ageing in place' model.
9. Break down the barriers between compensable/non-compensable systems.
10. Need for more public education programs/integration with the community.
11. Involve young people, their families/friends and carers in planning to ensure appropriate approaches are taken.
12. Pilot new accommodation models now and/or with an action research approach. A best practice approach.
13. Need to collect data on needs, both current and projected.
14. Place performance targets in CSDTA.
15. Create flexibility in current services to allow more disability access for people in Commonwealth facilities.
16. Need to see this as a human rights issue - young people are not getting access to basic rights of disabled as citizens.
WHERE TO FROM HERE?
The summit agreed on two mechanisms to ensure that momentum is maintained and that real outcomes are achieved. The role, purpose and structure of these groups were further developed in a national meeting three weeks after the summit.
The first structure is a cross-sectoral National Young People In Nursing Homes Advocacy Alliance involving families, people with disabilities service providers and policy groups to:
· co-ordinate lobbying efforts across the country on this issue
· form partnerships with and across health and community service sectors to achieve satisfactory and sustainable long term solutions
· and ensure action occurs on the agreed strategies.
The Alliance will be supported by the formation of 'engine rooms' in each State and Territory to continue to drive and co-ordinate activities at a state level, and to feed into the national campaign. Some states have well-established groups that have been working on the issues for some time. The Alliance will be resourced by the Consortium until all state or territory based groups are established.
The second structure is a National Advisory Group for Young People In Nursing Homes comprising representatives from Commonwealth and State governments, non-government service providers, people with disabilities and their families, advocates and other stakeholders to oversight the implementation of the agreed strategies. The terms of reference for this group will be developed by the consortium in collaboration with members of the National Alliance, and State and Commonwealth governments.
It is anticipated that the National Alliance will convene a conference in early 2003 to bring together young people in nursing homes, families and carers, service providers and governments, to discuss and develop models of care that are consistent with the principles.
WHAT DOES THIS MEAN FOR PEOPLE WITH HUNTINGTON'S DISEASE?
There is currently a desperate need for appropriate long-term "nursing home standard" care for people with HD who are under the age of 65. In the specialised HD unit (Huntington's Lodge) at Lottie Stewart Hospital (LSH) the age range is 30 to 52 years, only one of whom is over 50. As this unit only has 15 long-term beds many people (under the age of 65) have to be inappropriately placed in aged care nursing homes and hostels.
Aged care facilities are only supposed to care for people over the age of 65. Yet we know that in NSW there are at least 75 people under the age of 65 who are residential care. That means that there is a minimum of 60 people with HD, under the age of 65 who are inappropriately placed in aged care nursing homes and hostels.
The process for any person entering an aged care facility includes an assessment by the Aged Care Assessment Team (ACAT) and the issuing of a 2624 certificate. The Social Workers attached to the NSW HD Service are continuously experiencing difficulties in placing people with HD in nursing homes because they are unable to obtain the appropriate assessment and 2624 certificate.
Nursing homes are also reluctant to take people with HD, the reasons being:
· the difficult behaviour and physical symptoms often associated with HD
· the need for extra food and the time and expertise required for feeding
· people with HD often require special beds or chairs such as the fallout bed which costs approximately $2,000.
· nursing homes don't get enough funding for people with HD because the cognitive impairment does not rate high on the Resident Classification Scale.
· nursing staff are distressed by having to care for such young patients.
However those nursing homes that do take people with HD are offered an excellent education and back-up service from all members of the NSW HD Outreach Team. The service includes input from nurse, social worker, dietician, speech pathologist, etc.
WHAT IS THE ASSOCIATION DOING?
Richard Bobbitt and Robyn Kapp have met with representatives from the office of the Minister for Health, The Hon Craig Knowles MP to express our concern regarding these matters. Robyn Kapp together with Social Worker, Ros Curran, attended the inaugural meeting of the NSW 'engine room' of the YPINH consortium. Robyn has expressed interest in maintaining contact with this group.
In the lead-up to the NSW State Election in March 2003 we shall be 'stepping up the plate' regarding the issues of young people with HD in nursing homes. We are committed to advocating on behalf of people with HD and their families to ensure that appropriate facilities are available for the type of care required.
Acknowledgement: "Gateway" November/December 2002 - AHDA (NSW) Inc.
The Queensland Association is also committed to advocating on behalf of people with HD to ensure that specialized care is available. As stated in the President's article, the Association will continue working towards establishing a special HD unit and will look at various avenues to attract funding and will also seek ongoing commitment from established service providers.
Rotary Christmas Hamper Raffle - Many thanks to all who purchased tickets in the raffle - the winning ticket was sold by the Association to G. Beccaria, Ticket No. 1563. $463.00 was raised for the Association.
Cookie Drive - The recent Cookie Drive was well supported by readers and we thank those involved for participating in this fundraiser. Total proceeds to the Association amounted to $475.00.
Community Assistance - We have received, and gratefully acknowledge major financial assistance from the following donors:
J. Bolton
J.T. Bowen
Busy Bee's Linen
H. Heath
H. Wilson
The QUT Staff Community Welfare Fund, Year 2002 round of Grants, allocated $1840.00 to the Association for the purchase of a Minuet Bed. The Bed will be loaned to a HD patient in Queensland, through the Association's Equipment Lending Scheme.
Money allocated by the Fund is raised through the generous donations of QUT staff as part of their commitment to the community. We extend our sincere appreciation to the QUT Staff Community Welfare Fund, and to QUT staff members for their generosity.
Townsville Family Support Group Meetings are held on the first Thursday of every second month. However, to coincide with Gwen's visit the next meeting will be held on Thursday the 20th March - the following meeting will be on the 5th June.
Care Management Meetings are held on the first Sunday of each month. In an effort to suit most members the Group will have Wednesday outings, as a general rule. As Brothers Leagues Club morning tea melodies are generally well accepted the day will sometimes change to a Friday. Dates for the Social Calendar have been forwarded to members of the Support Group.
Bundaberg Family Support Group Meetings. If you are interested in attending please contact Nancy or Jenny for dates and times.
The Sunrise Rotary Club in Bundaberg has been supporting the Bundaberg Family Support Group for over five years and during that time a considerable amount of money has been raised through the sale of raffle tickets.
All funds raised are used to provide support for families affected by HD in Bundaberg and surrounding areas. Our sincere thanks to the Sunrise Rotary Club for their contribution over many years.
Nancy Swanson has spent many hours selling raffle tickets on behalf of the Group during that five year period - well done Nancy - its time you had a break!
March 8 Movie Night
March 18 Management Committee Meeting 6 pm at HD Centre, Annerley
April 15 Management Committee Meeting 6 pm at HD Centre, Annerley
May 18 Aladdins Bazaar - further details in next Newsletter
May 20 Management Committee Meeting 6 pm at HD Centre, Annerley
AHDA (Qld) proudly supported by Scanlon Printing Company - Phone 07-3865 3700