I have read many posts on a Facebook page that I belong to about how to get help for a family member with Parkinson’s.
The first thing to do is make sure that the person with Parkinson’s or PWP goes to see their GP, discuss what the person’s challenges are and request an assessment to get a baseline. It may be that there is a service in your area that will do home visits, but it is very rare that they do. Most of the time an assessment needs to be done to clarify what specific assistance is needed.
The other thing to be aware of is that if there is someone living in the house that may need a wet floor/accessible shower this may be able to be paid for under health funding. So, please don’t rush out and redo your bathroom at your own cost. It is worth noting too that if you qualify for funding to do this this is a one time only package. That means that if you move to another house, you cannot get modifications again. So, be really sure that you are staying put if you want to have modifications done.
The other thing to note is not to buy any equipment. I have heard of many people buying wheelchairs, commodes, walkers and all manner of other pieces of equipment and spending a lot of money doing so. This should also be paid for under health funding with a referral from your GP. This is important as an assessment from an Occupational Therapist is vital to get the right equipment for each person. Also, saving yourself quite a lot of money.
It is also important to contact Work and Income (Ministry of Social Development) to see if any financial support is available. A Supported Living Payment might be available, but if someone is over 65 years they would be better off on Superannuation. A Supported Living Payment may also be able to be paid to someone who acts as a carer, as long as that person is not a spouse or partner. If eligible for a benefit then the PWP is likely to qualify for a Community Services Card which can give cheaper GP’s. Not all GP’s do this, but most of them would. My GP went from about $60 to $19.50. You may also be able to get a Mobility Parking Permit, so you can use the Disabled Parking spots, as long as you have the PWP with you. Plus ask the GP about discounted taxi fares. They should have information on where to apply for this. In Canterbury one of the agents is Aspire Canterbury.
The first step is to get in front of a GP and request a referral to a specialist. They will know the correct pathway for the support that is needed.
All this aims to get the support around the PWP and those caring for them, for everyone’s health and wellbeing.
Hope this is helpful.
My journey with Parkinsons 
Hi, Unfortunatly not all of NZ is equal and I find the PD FB pages frustrating when members say what you can get and not get.Also since major changes in the disability sector a month or so ago access to alot of services have been cut.South Island PD services are generally better than the North and areas of Auckland being the worst.Parkinsons NZ nurses are now greatly reduced and most only doing phone consults. They are not allowed to discuss medications, most of these nurses have years of experience, now their job is providing comfort and knowing what help is available in the local area they work in, in some cases they can do referals.In the region we personally live in, there is no Neurologist taking on PD patients (I beleive there is only one here), we get sent to Wellington once a year for an MRI, due to special circumstances and this is read in Auckland) there is a team in the Eldercare dept of the hospital that aims to review every PD patient six monthly, this is more realistically nine monthly. This team is run by a wonderful Geratrician who has an interest in PD, but you could be allocated to see any team member.(This includes young onset patients) We see him privately at a huge cost.Enable who assess (in our area) for wet floor bathrooms, require their OT to assess the PD patient.This is after your have provided an OT assessment yourself. This is another curve ball as unless you have been an admitted hospital patient, you are unlikely to hardly make it to the waiting list for a public funded OT.The minimum now for a referal is “usually” a wheel chair patient.The dietician is much the same weight loss, swallow issues etc don’t even get you on the waiting list.I won’t mention a SW, this option was offered to us numerous times when newly diagnosed, you would know the likelihood of getting into this service more than me now.As you mention a CC card this is getting more exact with WINZ if there is a working spouse. Even harder for those with dependent children for them to qualify for a CC card due to family income.As you say many Dr’s practices often only take on a quota of CC patients and because of GP shortage you can’t easily change GP practice.Parkinsons NZ has greatly changed its focus, we are watching this with interest.Having been an early onset patient and now a Goldcard and CC holder. We note so many reduction to services.BUT like you, keeping positive and very physically active helps us get by. Sadly we have just been told that the hospital hydrotherapy pool exercise class will cease. Time to come up with a new exercise option…We do hope you are doing well and enjoying your bowels.Robyn and KeithSent from my Galaxy
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It is difficult to know what is and what isn’t available in all areas. But if we share our experiences it might give some clues to others to keep looking at what is available and if not, why not! It is so important to have support in this journey.
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