New Zealand helps discover gene.
Special Education 2000.

Friday, August 15, 1997

NEW ZEALAND SCIENTIST HELPS DISCOVER TUMOUR GENE

New Zealander Dr Russell Snell leads a genetic research team in Cardiff, Wales, which is part of an international collaboration that recently isolated the gene responsible for Tuberous Sclerosis, a rare and inherited condition involving multiple tumours. The paper explaining the discovery has just been published in the prestigious international scientific journal Science.

Tuberous Sclerosis affects approximately one in 6,000 newborns.

People with the condition can develop tumours in the brain, skin, heart, lungs and kidneys, with different sumptoms appearing at different stages of life. Few of the tumours are malignant, and for some people the only signs may be de-pigmented skin lesions and small tuber-like skin growths. But Tuberous Sclerosis can also be devastating. Heart tumours in babies and brain or kidney tumours in adulthood can be fatal. Brain tumours also often cause mental disabilities, epilepsy, autism or attention deficity-hyperactive disorder.

The newly-identified gene is thought to be a tumour suppressor, which normally operates by controlling cell growth. The collaboration discovered 30 different mutations in the gene, which stop its normal action and allow tumours to develop.

Dr Snell is "very excited" about the discovery. "It will enable a better diagnosis for patients and members of families affected by the condition," he says. "Clearly the long term aim is to develop a treatment for Tuberous Sclerosis. Another exciting prospect is that genes like this are often involved in cancers, so this may shed light on the cancer process in general."

Pat Coakley, of the NZ Tuberous Sclerosis Support Group, says the finding gives families affected by the condition more hope for the future. Families could soon be tested with a simple blood test.

Dr Snell's Cardiff work is partly funded by the Health Research Council. He will return to the University of Auckland in January 1998 to work with Professor Richard Faull on a transgenic model for Huntington's disease, which will hopefully lead to treatments for the condition. Dr Snell has previously worked on transgenic mice at Ruakura, and during his PhD in genetics at Cardiff was involved in the isolation of the gene for Huntington's Disease and discovery of the gene for Myotonic Dystrophy. Information Dr Russell Snell, e-mail SnellRG@cardiff.ac.uk, phone

Mr Pat Coakley, NZ Tuberous Sclerosis Support Group, phone 09 483 5392,

e-mail PatCoakley@lion-nathan.co.nz

On the significance of the discovery - Dr Don Love, University of Auckland School of Biological Sciences, phone 09 373 7599 ex 7228 (available from Monday, August 18)

Special Education 2000-what on earth is happening?

• More money for support for students with high/very high needs - $17 million next year.
• But what will it be used for, and how will parents know what their child will get.
• More money to all schools under the special education scheme.
• But some schools appear to be he very reluctant to use of any it, to support students who have missed out on ORS.
• Severe behaviour initiative pilot to go ahead in Waikato from 1998.
• But still not clear what sort of support will be available for students who missed out on ORS because their problems are deemed to be "behavioural"
• More money for speech language therapy for students NOT in the Ongoing Resourcing Scheme.
• No new therapist, specialist or extra teacher support for students with high/very high needs in regular classes yet.
• More money for equipment for first half of 1998-not a lot!
• More money for professional development of principals and teachers.
• No training for parents, very little information, little or no consultation.
• Money for information and training of Boards of Trustees.
• 0800 help line set up by Ministry of Education 0800 622 222 during office hours.
• Different stories from MOE and SES about support for students with behaviour difficulties. Will they or won’t they have continuation of this year’s support?

What are the issues?

There appear to be three main problem areas:

1. Students who have not qualified for ORS and should have, or who are in the "high" group and should be in the "very high" group.
2. Students who have not qualified for ORS but who have high/very high needs for behavioural support. The families of children with autism and Asperger’s Syndrome are particularly concerned about this issue.
3. Schools that are already saying they are not prepared the use the special education grant for those who have not qualified for ORS but who have been getting aide hours.

What can be done?

• At IHC’s Advocacy Centre, we have been gathering information from families and staff, as well as trying to find out more from the Ministry of Education and SES. We are meeting with them both in another attempt to clarify the situation for next year, and to impress upon them the urgency of "getting it right."
• Schools and families will by now have found out the results of the ORS applications. If you think the decision made was wrong APPLY FOR A REVIEW BY DECEMBER 10. Schools have the information on how to do this. Look carefully at the areas of communication, safety, and curriculum adaptation. Is there anything more that you should include? Have you supplied enough information?
• If your concerns are about behaviour support, PUT IN AN APPLICATION FOR A REVIEW BY DECEMBER 10 (or a new application) if you feel that your child meets the ORS criteria.
• Contact SES to ask what support will be provided next year around behaviour support, or for transition from the level of funding now received.
• If you are concerned that the school is not prepared to provide support, contact us.

How much is enough?

SE2000 promises an increase in support for students with high and very high needs who are eligible for Ongoing Resourcing Scheme, from part way through next year. The support will be teacher aide hours at this stage.

So for students what sort of support will be needed?

It is hard to imagine that a student who meets the "very high" criteria and is in a regular class would need anything less than full time support, as well as specialist teacher time and other interventions. The teacher aide component would cost a minimum of $10 000.

For a student with high needs, we could guess that about 15-20 hours support per week would be needed. This would cost at least $6 000.

If this policy is to work, it must be funded adequately. We are watching this aspect of the policy very carefully, and will let you know the details when they are received.

Fund holding.

A new development in SE2000 is the idea of schools or clusters of schools being able to manage the funds for their students in the Ongoing Resourcing Scheme.

We believe there is not enough information for schools to make decisions on, and there has been no consultation with parents.

• If the system is funded on an ‘average’ amount per student in ORS, schools will have to decide who needs more than average and who needs less than the average amount. If they have a few students in ORS or if they the average funding level is not high enough, they will not meet their students’ needs.
• Parents will have to advocate within their own schools for the support their children need, knowing that their gain is the loss to another child in the same school. This will be extremely hard, and may create tensions between parents. It will make it very hard for parents to develop good relationships with their schools.
• Schools may want to use funds in ways parents don’t want – for example to set up mini-units so they can put all their "ORS students" together to maximise their funding.

Questions, questions.

Here are some questions that need to be answered. How about asking them locally. Let us have a copy of any answers you receive.

? There will be far fewer students receiving ORS funding than previously got SEDA – so how will the extra $17 million promised for 1998 be used?

? How will schools be accredited to be fund holders? Will parents be consulted?

? What rights will parents have to appeal ORS decisions, and decisions made by schools?

? Exactly what sort of "further information" will be gathered before ORS is fully implemented? Will parents be consulted?

? How will decisions be made about funding in different school settings? (eg: special, regular) Will parents be consulted?

? How will the Nelson trial of full special education funding be monitored? Will parents be consulted? – Will their opinions be given the same weight as schools?

Contact details: IHC Advocacy Centre Staff in Wellington – 04 472 2247 or 0800IHCIHC; in Auckland – Sue McKinnon 09 379 5760.

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