IHC Hot Issues – May 2012
- Family carers win right to be paid
- IHC Advocacy Heartland Forum finds innovative NASC practice in the North
- Modern day institutionalisation in New Zealand
- Health crisis for those with Intellectual Disability – urgent action needed
- New UK resource on ‘learning disabilities’ for clinicians welcome as study shows that patients with intellectual impairment get poorer medical care
- Diabetic patients finding ‘fattism’ prejudice
- New Zealand immigration policy still discriminates on grounds of disability
- Report to United Nations includes New Zealand disability data
- HRC guide to complaints about discrimination on grounds of disability
- HRC announces inquiry into New Zealand Sign Language
- The euthanasia debate
- New nationwide service to provide genetic counselling
- DVDs for girls and boys about puberty
- Disability in the news for the wrong reasons
- Australian National Disability Insurance Scheme – update
- Imagine Better’s Conversations to create community change
Family carers win right to be paid
The Court of Appeal has dismissed the Ministry of Health’s appeal against paying family carers. The case, which was first lodged in 1999, argued that not paying family caregivers of disabled people was discriminatory. The win means that the families can now go through a process to assess how much they should be paid. This ruling provides another marker in how New Zealand can better value carers. The recent pay disputes in the aged care sector and the sleepover decision reflect the journey we are on to better respect the lives of elderly and disabled people by improving the value we give to the people who provide their care.
IHC Advocacy Heartland Forum finds innovative NASC practice in the North
While in Whangarei at their Heartland Forum in April, IHC Advocacy heard good reports about the local NASC, NorthAble, which has developed a ‘navigator’ scheme for those they support. This navigator scheme received a best project award at the recent NZ Federation of Disability Information Centres conference.
Heartland Forums continue in Gisborne on 25 June and Napier on 26 June.
Modern day institutionalisation in New Zealand
A 32 year old man with intellectual impairment, autism and mental health needs who has not committed any crime does not understand why he is locked up, with only a small outside space for exercise. His parents have been trying for many years to get appropriate support and justice for their son. His story, in a front page article in the Dominion Post shocked many readers who thought our institutions had been closed.
Health crisis for those with intellectual disability – urgent action needed
It is almost nine months since the Ministry of Health published the long awaited report Health Indicators for New Zealanders with Intellectual Disability. Sadly this confirmed what was first reported in the 2003 To Have an ‘Ordinary’ Life report by the National Health Committee. The Committee found it disturbing that people with an intellectual disability received inadequate and improper health care provision. They told government that significant and urgent changes were required to address the neglect of these basic health needs. They made several recommendations, including that the Minister of Health and the Minister of Disability Issues should direct the Ministry of Health to ensure that primary healthcare providers are aware of the health needs of adults with an intellectual disability, have clearly developed policies for access to services, comprehensive health assessment tools, appropriate staff education programmes, and that health promotion material is accessible for people with an intellectual disability. Unfortunately, this did not happen.
IHC and Special Olympics New Zealand have lobbied for over a decade for funded annual health check assessments as these are internationally acknowledged as the single most effective tool to address the issues, and have an extraordinarily beneficial impact on the heath status of this group of New Zealanders. Recently IHC was joined in our call for action by the Chief Human Rights Commissioner, David Rutherford.
IHC’s unease about the lack of action over the past decade was confirmed with the data in the Ministry’s own report: life expectancy 18 – 23 years less than other New Zealanders; 1.5 times more likely to receive treatment for cancer; twice as likely to receive renal replacement therapy; twice as likely to receive treatment for coronary disease; twice as likely to receive treatment for diabetes. The list is long and shocking.
The Ministry told IHC that they would develop a publication responding to the Health Indicators report, which they said would report effective health strategies for people with an intellectual disability. IHC was assured that the publication would be in our hands before Christmas 2011. IHC met with Ministry officials in 2011 to assist them to prepare the publication we were eagerly awaiting. No publication has arrived. Our enquiries as to its whereabouts have not been reassuring. Now, without being implemented, the ‘Ordinary Life’ report is out of print and will not be reprinted by the Ministry of Health.
New UK resource on ‘learning disabilities’ for clinicians welcome as new study shows that patients with intellectual impairment get poorer medical care
Meanwhile the British General Medical Council has developed a website for doctors wanting to learn more about interacting with patients with intellectual impairment (or learning disabilities to use the local term), which should also be useful for New Zealand clinicians. The website includes advice on communicating with a patient, seeking consent and assessing an individual’s need. Doctors can also gain a certificate to demonstrate the skills they have developed from using the site.
It is timely considering a recent survey of hundreds of doctors by the UK General Medical Council which confirmed that patients with learning disabilities receive worse care from clinicians than non-disabled patients, despite having higher health needs. Doctors also said they would like more information.
Niall Dickson, chief executive of the General Medical Council, said: “We know that too often patients who have a learning disability receive poorer treatment and that sometimes health professionals fail to see past the patient’s disability to identify underlying physical problems. We hope this advice and support will be useful to doctors and others who want to make sure patients with learning disabilities are given the best possible care and treatment.”
Diabetic patients finding ‘fattism’ prejudice
Many disabled people will develop diabetes as they age. Diabetes may also cause various impairments. It is becoming a major health issue and one of the New Zealand Government’s health targets. However, there are now anecdotal reports from overseas that discriminatory ‘fattist’ attitudes from society and health care providers are affecting the doctor/patient relationship and patients are not getting the care they need.
New Zealand immigration policy still discriminates on grounds of disability
It is now against the UN Convention on the Rights of Persons with Disabilities to discriminate against disabled people, and New Zealand ratified this convention in 2008. But our immigration law still discriminates on the grounds of disability, on the assumption that disabled immigrants will cost more to support than non-disabled ones, regardless of what other benefits they and their family might bring to the country. One family who has been here for several years have been denied residency, even though the son was diagnosed with muscular dystrophy after they had settled here. Another family has applied for a medical waiver for their autistic child which they will need to win before their residency application can be considered. New Zealand has had legislation discriminating against disabled immigrants since 1882, so it is surely time it is reviewed.
Unfortunately, New Zealand is not alone. Canada recently rejected an application for immigration for a family which included a woman with Down Syndrome.
Report to United Nations includes New Zealand disability data
The current session of the United National Committee on Economic, Social and Cultural Rights includes reports from New Zealand NGOs as well as the Human Rights Commission. There is also a significant report on the state of disability in New Zealand compiled by the International Disability Alliance.
Human Rights Commission guide to complaints about discrimination on grounds of disability
The Human Rights Commission has produced a short guide to the definition of disability in the Human Rights Act, including what is covered and how to complain.
Human Rights Commission announces inquiry into New Zealand Sign Language
This Inquiry will look at the use of sign language, barriers for Deaf people and how to strengthen NZSL.
The euthanasia debate
A bill allowing for the euthanasia of terminally ill people is being developed by Labour Member of Parliament, Maryan Street. If her End of Life Choice bill is drawn from the parliamentary ballot MPs will likely be allowed a ‘conscience’ vote, meaning they do not have to follow a political party direction. It is already attracting much debate.
Euthanasia is a sensitive topic for many in the disability community as disabled people have been the target of euthanasia policies in the past. Disabled people, particularly those who do not use words to communicate, are particularly vulnerable. The issue for many is when does a right to die become a duty to die for an old, sick or disabled person? When does euthanasia become eugenic? Will legalising euthanasia make us more tolerant of other eugenic interventions?
Common eugenic practices have included sterilisation of disabled women without consent. New interventions use surgery and medication to arrest the development of disabled children, such as the ‘Ashley treatment’ in use in the United States.
New nationwide service to provide genetic counselling
A new Genetic Health Service is being established by the Ministry of Health and DHBs to provide diagnostic advice and genetic counselling to people with concerns including pregnant women and health professionals wanting to know how to support their patients.
DVDs for girls and boys about puberty
Tara Grows Up is a short DVD about puberty for girls and young women with intellectual impairment before they have their first period. The DVD should be viewed with their families and caregivers, who can be on hand to answer questions. It complements the 2010 DVD Billy Grows Up about changes boys experience at puberty. Both DVDs are available free through the IHC website.
Disability in the news for the wrong reasons
The stresses of daily life with an energetic three year old with Down Syndrome and autism.
Hamilton schools refuse to enrol an autistic child.
The Health and Disability Commissioner criticises Auckland health care provider which illegally held a disabled 43 year old woman in a secure dementia unit.
A 26 year old disabled man, who is a New Zealand citizen, is apparently being held in Indonesia by his mother who has him chained to the bed, while his New Zealand family tries to get him to New Zealand for better care.
Australian National Disability Insurance Scheme -update
Hot Issues last month reported on Australia’s new National Disability Insurance scheme. The Prime Minister, Julia Gillard has previously said that there would be provision in the May Budget to end the ‘cruel lottery of care’ and start the roll out in 2013 in four sites and for 10,000 people. The Opposition is still deciding whether to support it. Although A$1 billion was provided in the Budget, there is already criticism that this is not enough.
Imagine Better’s conversations to create community change
Imagine Better is starting a series of regional ‘community conversations’ whereby individuals and families get together to create community change. The first one was held in Taupo in May and many more are planned during the year. Possible topics include: circles of support; safeguarding the future; managing the education system; navigation and NASC; making meaningful and real contribution; and individualised funding.
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