IHC Hot Issues – July 2012
- Closure of Residential Special Schools causing mixed reactions
- IHC’s Successful Ageing Project wins international dementia award
- Campaign to Save Disability Law
- Why can’t we get policy on carers and caring right?
- Health and Disability Commissioner finds woman with intellectual impairment and mental illness failed by Hutt Valley Mental Health
- Risks in streamlining ethical review process for health research
- Down Syndrome activism heats up
- Mental Health Commission disestablished and Blueprint II released
- Launch of Creative Spirit
- Mainstream Employment Programme extended to the private sector
- Disability News: ADHD prescribing escalating; Auckland accessibility problems; Fetal Alcohol Syndrome is an ‘invisible disability’; Autism brain banks melt; autistic adults overlooked
- IHC library has huge range of resources
Closure of Residential Special Schools causing mixed reactions
Reaction to the Government’s planned closure of New Zealand’s four Residential Special Schools has been mixed. The schools: Westbridge School in West Auckland, Salisbury School in Richmond, Nelson, and both Halswell and McKenzie Schools in Christchurch, have a combined total of 116 beds and up to 230 staff. Currently, students with complex needs (behavioural, social or educational) can spend up to two years at one of these schools. The plan is to close them by the end of the year and replace them with an intensive person-specific wraparound and outreach services for each student in their local community and local school. The Ministry of Education cites positive results for trials of such programmes. Submissions to the Ministry of Education closed in June but campaigning for the closures continues. The Minister of Education, Hon Hekia Parata, is expected to release the results of the submissions by the end of July.
While there is strong commitment by IHC Advocacy for quality local inclusive education for all disabled children, there is also evidence that many families are not currently being well served by their local schools and communities. In a recent discussion on Radio New Zealand, principals of mainstream schools admit that because of insufficient funds, they are excluding students with special education needs from some activities such as school camps. A key factor for the success for this latest reform will be the quality of new programmes. They need to be better than what is currently available for many disabled students and their mainstream schools.
Some in the sector claim that a specialist boarding school is a positive short-term option for some young people with family or support issues. But are Residential Special Schools the best solution for today’s young students? The Ministry of Education does not think so and they do not fit in with the current policy of Success for All.
Salisbury and Halswell hark back to an era when policy separated girls and boys with intellectual impairment from each other and society. Although things have changed over the last 100 years some see the existence of such schools as reinforcing such attitudes.
Articles and information on closure of Residential Special Schools
- New Zealand Herald: Alarm over proposal to shut schools for disabled, 23 July 2012
- Christchurch Press: Plea to retain residential schools, 19 May 2012
- Ministry of Education: Residential Special Schools consultation and Q&As
- Inclusive Education Action Group: Closing residential schools makes sense, press release 19 June 2012
- Reducing Residential Special Schools numbers is positive, press release 30 May 2012
- PSA: Govt can’t treat Residential School closures as a done deal, press release 15 June 2012
- NZEI wants continuing role for Special Residential Schools, press release 15 June 2012
- Salisbury School website: their campaign for local support and submissions
- Ex-pupil’s turn to help school: Teacher aid says Salisbury changed her life, Nelson Mail
- Human Rights Commission website: Disability Human Rights Commissioner, Schools have legal duty to enrol students with disabilities, Disability Human Rights Commissioner Paul Gibson, press release 19 July 2012
- Dominion Post, NZEI President Ian Leckie & IHC Advocate Trish Grant: Our children are guinea pigs in a bad experiment, 17 July 2012
- IHC website: Learning Better Together, a seminar on inclusive practice held throughout New Zealand
- Morning Report: Principals losing confidence in special needs education, 21 June 2012
- Ministry of Education: Success for All
IHC’s Successful Ageing Project wins international dementia award
The IHC’s Successful Ageing Team has won the Dementia Design Innovation of the Year Award at the International Dementia Conference in Sydney. The award was for a checklist or ‘tool’ to help older people with intellectual impairment in New Zealand living in smaller group homes and at risk of developing dementia. It had been adapted (with their encouragement) from a UK checklist designed for larger facilities where residents only access a limited range of spaces. The new tool helps design appropriate home-friendly environments where residents use a wider range of areas including kitchens and laundries.
‘Project manager Nic McKenzie says IHC supports around 6000 adults with intellectual disability in residential services across New Zealand. About 25 percent of this group is over 50 years and numbers are growing. “By 2020 they will have increased to 50 percent, and included among them are large numbers of people who have Down syndrome, who are significantly more at risk of developing dementia.”’
IHC launched the Successful Ageing Project in 2010 as a commitment to enable the increasingly ageing population in its residential services to stay in their own homes as long as possible. Part of the strategy involves recording life stories of some of the older residents.
For information, call Successful Ageing Project manager Nic McKenzie on (03) 341 9286
- IHC website: IHC wins international dementia award, press release 5 July 2012
- Wanganui Chronicle article: Life stories part of prize project, 9 July 2012
Campaign to Save Disability Law
The Ministry of Justice’s decision to withdraw funding from the only specialist disability law facility in New Zealand is facing strong opposition. Instead of expanding this successful service to other centres, this unique service will disappear.
The Public Sector union, the PSA, says the closure is contrary to the rights of access to legal representation in the United Nations Convention on the Rights of Persons with Disabilities to which New Zealand is a signatory. Other disability sector organisations such as Engage Aotearoa are being vocal in support.
A ‘Save Disability Law’ Community Hui will be held on Monday 30 July 1pm-3pm at Western Springs Garden Community Hall, 956 Great North Road, Auckland, to: ‘Send a message to the government that we are serious about saving disability law through the continued funding of Auckland Disability Law and extending specialist legal services nationally for disabled people.’
Media releases and information on Disability Law
- Radio New Zealand, Checkpoint: Auckland Disability Law fights against closure, 6 July
- Scoop: Save Disability Law, Auckland Disability Law, press release 4 July 2012
- PSA: Plans to withdraw disability legal services discriminatory, press release 5 July 2012
- Engage Aotearoa website: Help Save Disability Law, 7 July 2012
- A Facebook Page has been set up
Why can’t we get policy on Carers and Caring right?
As disabled people and their families know, accessing quality caring is vital. But first, government agencies need to collaborate and sort out their policies so that they are consistent, fair and ensure appropriate support is available. For example, Ministry of Health’s policies will not allow families to use Career Support while in paid work. So single parents of teenagers with high needs, wanting to work cannot use Carer Support to pay for after school care or holiday programmes (but they can use it for care if they are not in paid employment during that time).
Inflexibility and lack of collaboration between MSD and MOH policies means parents are remaining on the benefit and are unable to utilise their Carer Support because they struggle to find people who can manage their children. Yet organisations which are providing suitable care, such as the acclaimed Rainbow Afterschool Umbrella Programme in Hawke’s Bay, are under threat of closure because they cannot get funding to remain open.
Meanwhile, in the aftermath of the victory for paid family carers of disabled adults the Ministry of Health has published the Terms of Reference and Membership for the Technical Advisory Group which will look at implementing the changes arising from the case. Auckland Disability activist Dr Huhana Hickey was recently interviewed on Marae Investigates about how this win would benefit her family. Economist Gareth Morgan has also provided an opinion.
Even ACC is unable to be consistent in how it treats family carers. There is a suggestion that payment to carers is a lottery with some carers paid under the minimum wage.
- Ministry of Health, Terms and of Reference and membership for the Technical Advisory Group
- Healthpages website: TVNZ interview with Dr Huhana Hickey, Marae Investigates, 17 June 2012
- New Zealand Herald, Gareth Morgan: Appeal ruling step towards care rethink, 22 May 2012
- New Zealand Herald: ACC cuts carer’s pay under minimum wage, 5 July 2012
Health and Disability Commissioner finds that woman with intellectual impairment and mental illness failed by Hutt Valley Mental Health
The Health and Disability Commissioner Anthony Hill has found that a woman with intellectual impairment died because the Hutt Valley DHB lacked specialist knowledge and processes for people with intellectual impairment who also have mental health conditions. Several agencies were involved in her care but the fragmentation and lack of leadership by the DHB amounted to a breach of the Code of Health and Disability Services Consumer Rights. This decision follows a critical report by an independent inspector on leadership problems and blunders within the Hutt Valley DHB mental health services between 2008 and 2010. The DHB has now introduced guidelines for dual diagnosis and made other improvements.
- Report: Hutt woman let down by agencies, Dominion Post 5 July 2012
- Hutt Valley mental health blunders revealed, Dominion Post 28 June 2012
- Health and Disability Commission website: full reports
Risks in streamlining ethical review process for health research
Most research involving human participants is required to go through some form of ethics approval process. The committees check aspects such as ensuring participants or patients will be safe and are not coerced into taking part. The provision of clear information is vital so that participants can give their informed consent and understand their rights. Our modern system of ethical approval in New Zealand has developed since the 1988 Cartwright Inquiry uncovered unethical practices at National Women’s Hospital. Publicly funded health research now has to go through the Health and Disability Ethics Committee (HDEC) system administered by the Ministry of Health (universities have their own processes). However, the HDEC system has just been restructured, resulting in a more streamlined process with fewer smaller committees and representation from disabled people unlikely. Only certain specific categories of research will now require full review.
Concerns were raised about the new system at a Bioethics Conference in Dunedin earlier this year. The new system could also bring risks of harm, particularly to ‘vulnerable populations’ including some disabled people. Disabled people as research participants can provide valuable information on a variety of topics such as genetic conditions, effect of medications and evaluations of service provision. They also have rights to participate in mainstream research. But they must be treated ethically. An active and vigilant ethical review system is also vital to prevent the development of overseas practices such as paying people with intellectual impairment or mental illness to participate in unsafe drug trials.
New Zealand has a Health and Disability Ethics Committee system and the ‘disability’ aspect must not be overlooked.
- Cartwright Inquiry website
- Health and Disabilities Ethics Committees website
- Ethics Notes: Health Research Council website
Down syndrome activism heats up
The June Hot Issues noted the recent protests against new antenatal screening guidelines by Down syndrome activists. The campaign has been active and had much media attention. The International Criminal Court in The Hague has been asked to investigate New Zealand’s antenatal screening programme on the grounds it potentially uses genetic information to discriminate against people. Saving Downs has set up a Facebook page. Breakfast TV interviewed a young man with Down syndrome and two mothers about the issues raised.
The Huffington Post recently featured a blog post critiquing the assumption that Down syndrome causes suffering to families and individuals.
Meanwhile in parts of Australia having an autistic male in the family is now a valid reason for parents undergoing pre-implantation genetic diagnosis (PGD) to request a female embryo.
- Northern Advocate: Antenatal screening under fire, 7 July 2012
- Facebook: Saving Down syndrome
- Breakfast TV interview, 23 July 2012
- Blog post, Rachel Adams: Looking for suffering in all the wrong places, Huffington Post 9 May 2012
Mental Health Commission disestablished and Blueprint II released
The Mental Health Commission was disestablished in June 2012 and some of its functions taken over by the Office of the Health and Disability Commissioner. The last consultation exercise of the Mental Health Commission has resulted in the report known as Blueprint II to help guide the mental health and addiction sector in developing better, more integrated, responsive and cost effective services.
Launch of Creative Spirit
It’s not often that intellectual disability makes it into the social pages of the mainstream newspapers but the launch of a new programme to help people with intellectual disability into work with the ‘creative industry’ sector has been making a splash in Auckland. Creative Spirit was developed in Australia and has been taken up by various agencies in New Zealand such as Droga5 and Fairfax Media and it was the launch at Fairfax that made it into the Sunday Star-Times About Town pages.
However, local blogger Russell Brown who attended the launch, notes that although it was setup with good intentions, they still have a way to go in learning and understanding about disability.
- Creative Spirit website
- Stuff website: Fairfax Creative Spirit Launch, 22 July 2012
- Public address blog, Russell Brown, 19 July 2012
Mainstream Employment Programme extended to the private sector
After a successful pilot, the Government’s Mainstream Employment Programme is now open to private providers with more than 20 employees. It is also targeting younger disabled people and graduates with disabilities. The programme was previously available in the public sector only and was recently also extended to smaller schools with more than 300 students. Mainstream provides two-year subsidised employment, training and support for disabled people with approved employers. Unfortunately, it does not appear that any more resourcing has been given to Mainstream to do this extra work. It is also not clear what incentives there are to ensure the subsidised jobs become sustainable long-term private sector jobs after the government funding ceases.
A report that now over 100,000 New Zealanders are prescribed drugs for ADHD ran in various newspapers with some provided regional data and comment.
- Taranaki Daily News: Big rise in ADHD prescriptions, 21 May 2012
Adults with autism are falling between the cracks according to recent recommendation from the UK’s National Institute for Health and Clinical Excellence (NICE) after a major autism review. Details were published in the British Medical Journal (only the summary is publically available).
- British medical Journal, Practice Guidelines, Recognition, referral, diagnosis, and management of adults with autism: summary of NICE guidance
More news stories
- New Zealand herald: Auckland wheelchair users show Mayor Len Brown that Auckland is not accessible, 15 June 2012
- Stuff website: Foetal Alcohol Syndrome is an ‘invisible disability’, 14 July 2012
- New York Times: US Autism brain bank melts, 25 June 2012
IHC library has huge range of resources
Don’t forget the large range of resources available from the IHC Library through its online catalogue. Anyone can join and books can be ordered by email or phone from around New Zealand. The service is funded by donations and the only cost is the return postage.
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