Dear Ministry of Health,

I have previously requested information about the discontinuation of support for people with autism spectrum disorders, however I did not receive the information I asked for.

You have sent to me a 2012 NASC flow chart that instructs NASC how to decline services for people with ASD.

I would like information about the origin of this decision to cut services for people with ASD. Whose decision was it to do this and what written information do you have, as background material to this decision, given there must have been some sort of discussion, meetings, policies developed, or lead up to this decision, which must be in some written form somewhere within the MOH?

Yours faithfully,

Jill Adams

Dear Ministry of Health,

You have replied that
"there have been no specific decision or cut in services"
In Canterbury we have been advised that the following has changed or been cut:
* People with a new diagnosis will not be eligible for services
* People needing a higher level of support can no longer have an increase eg an increase in Carer Support (payment for respite)
* People can no longer ask for Individualized funding, personal care, domestic assistance.
* Support for adults is no longer available.

In my opinion your statement "the approach to ASD eligibility nationally is inconsistent" is appalling. Why has this been allowed to go on for such a long time? Why has this not been sorted out?

Also, on the flow chart, I find your question " Does your NASC currently accept some ASD only referral?" to be totally unacceptable. Why is the MOH asking NASCs if they will accept referrals for this group? Why is the MOH not directing the NASCs to take this group? This group have many amongst them who have a non - negotiable need for support. Families and agencies should not have to be advocating to NASCs for support.
The question that you have "Do they have ASD support related needs? " in my opinion should be the main question.

I have been advised that there are now ASD specific services in Canterbury.
This is what they look like in Canterbury:
* Respite - this is done privately, if unable to obtain then the respite houses are full, and have long waiting lists. On your flow chart it states 'National where available'. What does this mean and what is being done to increase services to make respite available?
* Behaviour support - this is now a national service, which has 26 places, this is full, with a long waiting list. Where is the availability here?
* ASD DHB coordination for new referrals

I believe that the cuts that have happened have resulted in services and supports going backwards. Is this a move to a position whereby there is a minimization, denial, or in any way a watering down of the need for support for this group of people who have ASD, with an ID? In my opinion,it appears that it is already happening.

I do not believe that I have received clear communication from these requests, and the information has raised more questions than has answered.

I would be very happy to be proven totally wrong regarding cuts to services, and happy to hear that all services that have been cut, reduced or are now not available, are totally reinstated.

Yours faithfully,

Jill Adams