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A long rave

A long rave

Edit Feb 2018: This thread has evolved into a chat thread, which is fine by me. In addition, I encourage other members to feel free to post their own 'long raves' in here too if wished. I will continue to post my own longer raves from time to time, as well as chat with friends along the way.

Original post from May 2016:

First of all, a (very) long post alert. Please don't feel obliged to read or respond. Mainly I am writing today to clear my own head of some things. So, here goes...

Last week, I managed to get to all planned appointments and activities every day of the week except Sunday. That only amounts to one, maximum two, per day, but was an improvement on previous weeks and months. I've made all planned appointments in a week before, but there have not been so many appointments in so many days consecutively. Many of you will know that, prior to about mid last year, I spent years very rarely leaving the flat. This was since the last of my breakdowns from paid employment in 2008 (one of so many similar breakdowns from paid working, though none as devastating in consequence as this last one). With each of these breakdowns, the recovery time got longer and longer. It's taken eight years to recover much at all this time around.

This week, so far, I've made none of my appointments or activities. In fact, I've not showered for days. Embarrassing to admit but maybe helpful to own up to it. As I write I'm still in what I wore to bed, as I was all day yesterday and the day before. The weird thing is that I don't feel that bad in my emotions, just crashed out physically and lacking almost all motivation except to use the computer. In other words, my mind and fingertips are alert and active, in fact nervy and overactive as usual, but the rest of me is crashed out. Perhaps I have entered what some people call a bipolar 'mixed state'. Whatever the terminology, this is where I am and I've been here so many times before.

The way I see it, there are a number of possible reasons for the way I am after last week:

  • inner conflict about how helpful my psychologist treatment is for me (saw her on Friday);
  • trying to further reduce my tobacco intake (the struggle seems disproportionately huge and exhausting);
  • needing recovery time from a big week (by my standards);
  • simply another manifestation of bipolar disorder in me.

Regarding the psychologist. She is young compared to me and I have the feeling that she may not grasp the full extent of my situation, partly through lack of life experience. Perhaps she may particularly lack an understanding of the various physical ailments that complicate things with me, some age-related (menopause, musculo-skeletal problems), one of them a chronic illness (crohns disease). She is treating me with some techniques from Dialectical Behavioural Therapy, something I honestly have never liked the sound of when I've read about it. The main 'homework' I have for this four week period is a sheet I am meant to fill out every night covering various things including tobacco use, coffee intake, isolating, unbalance eating, sleep patterns, lack of exercise. The sheet also includes sections monitoring mood every day. The problem I find is that monitoring and (by implication) tackling all these things at once is just overwhelming. I am significantly depressed after filling out the form because it seems to highlight all the ways I am failing rather than the ways I am succeeding. The psychologist has given me this sheet as homework once before and it had the same effect on me then. A full month long slump into depression is what followed. This sheet makes me feel very pressured to recover quickly from all of these things at once, a message that contradicts the advice of my psychiatrist (who I trust much more). His advice is to take it slowly and steadily and not feel rushed. As of yesterday, I stopped using the DBT form altogether. I am even considering giving up on the therapy with this psychologist after my next (sixth) session instead of seeing it through to the ten sessions my GP is willing to refer me for.

With the difficulty of further tobacco reduction, I am succeeding in reducing this a little more but the effort is gargantuan and seems to be sapping all the strength I have for making it out the door to my activities and appointments (or even to get dressed and showered). Writing here is just about the only thing that is distracting me from smoking again or thinking about it obsessively.

I've run out of steam on writing about it all now (a huge sigh of relief from any readers at this point).

I wonder if anyone else can make any sense of this.

27230 replies

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In response to: A long rave

Re: A long rave

👋💕☕️ @eth @Mazarita @MDT .... anyone else around.

In response to: Re: A long rave

Re: A long rave

G'day @Faith-and-Hope
Nice to see you about 🙂

In response to: A long rave

Re: A long rave

Hi @eth

Your co-ordinator of supports sounds so fantastic, caring, generous. Glad to hear you are building a pot plant garden in the new place. Guessing you also are sometimes still involved with the garden at the old family place, that seems to have been very good for you in the past.

I really appreciate your extra encouragement and information on NDIS.

The support/advocate who did the application is only available to me for one meeting before NDIS pre-planning meeting. That meeting with her is next Wednesday and will probably be about two hours, but I think she may be there with me for the meeting itself, which is by phone. For whatever reason, she has not been able to give much information on anything after the actual approval. You are giving me way more information about this part of the process than she has been able to so far.

One thing that seems to be a concern for her is my high level of articulation, clarity of ideas and liveliness of mind. When engaging with things outside my home, I do not look or sound like the usual identikit of someone with mental illness, even though I have struggled massively for decades with the most basic things about daily living that most people take for granted, even many with mental illness themselves. What a shame people with mental illness are so stereotyped.

Related to this, I am concerned that presenting a lot of very clear ideas about my plan may further prejudice my chances of getting enough support to really help me, due to that making it even more apparent how highly competent I am of mind. At the same time, I do not want to get a bigger budget than I need. Interested to hear your perspective about this, as I suspect it may have been similar with your intelligence and articulation as well.

Someone said I should keep my answers short and not talk a lot. I can try to rein in my natural tendency to talk at length and in a lot of precise detail, but may not be able to keep myself back for the entirety of a 90 minute meeting. I also have a strong and confident way of speaking that may even seem dominating at times, though inside I often feel way too fragile for this world by a long stretch.

So far this is what my GP and I talked about for my plan:

  1. ongoing support worker two days a week
  2. group activities of various kinds
  3. exercise sessions of various kinds
  4. ongoing weekly physio
  5. extra psych appointments on top of the usual (least important to me).

Not sure what else to say about this at the meeting, especially since it seems not a great idea for me to say too much!

Thanks again to others giving information and support on my NDIS stuff at this crucial moment, @Appleblossom @Faith-and-Hope @Bunniekins and more.

In response to: Re: A long rave

Re: A long rave

Hi @Mazarita I'm back if you're still here xx

Hi @Faith-and-Hope and @MDT xx

In response to: Re: A long rave

Re: A long rave

@Mazarita on the day of the meeting, some potential tips :

Ask your support person to do a lot of the talking for you - you could type your requests up for her before this next meeting with her so that you're both on the same page. But also stress that your disability is episodic in nature and what it's like on the bad days. You can also tell the NDIS interviewer how anxious and fearful you are on the day. It's a shame to have to do this but it does help with your plan outcome. On I think page 57 of the Re: Anyone started with the NDIS thread (or around there somewhere) is a full list of the questions they are likely to ask you. I'll try to find it shortly for you. My meeting was almost exactly what this list includes. Print it and share it with your support person too. That way you can go over your possible answers before the actual planning meeting. Personally I much prefer face to face meetings (you can still have your support person there with you) than on the phone with NDIS, for numerous reasons, but of course it's your choice.

Hoping I haven't missed you.

In response to: Re: A long rave

Re: A long rave

Maz @Mazarita it will take me a little time to find the page I'm looking for.

In response to: Re: A long rave

Re: A long rave

Still looking for it @Mazarita Looks like it was well before page 57 so I'm having to scroll backwards to find it. One thing has become clearer tho' - sometimes the planner has not read all the evidence you've submitted to get approved. So if you can, take a file or something with as many of the reports and support letters that you have kept copies of to the meeting. Another thing - a letter from C that talks about what your bad days are like would be helpful. I consider that he is what they refer to as an 'informal' support.

Will keep hunting for the list of questions now.

In response to: Re: A long rave

Re: A long rave

I think the NDIS has made rules (behind the scenes) to structure the kinds of supports various roles allow. That is what a few workers have explained to me.

@Mazarita

In response to: Re: A long rave

Re: A long rave

Me again @Mazarita so far I've scrolled back thru' 35 pages and not found what I'm looking for. Did find this tho' :

What are the benefits to you receiving adequate support?

What do you think will change in your life with adequate support?

Do you think you will continue to need these supports?

What are your future plans? What would you like to acheive?

In response to: Re: A long rave

Re: A long rave

Mazzy @Mazarita I finally found it!! On page 10!!! It's long, but it was spot on for the planning meeting I eventually had. See my note at the bottom before reading it all.

NDIS PLANNING MEETING QUESTIONS


LAC planner starts with introduction, role, purpose of visit, invitation to take breaks where needed, can come back another time if too distressful
Starts with following questions:
Participant statement
Goals?
How to achieve them?
Tell me who you live with?
Describe a normal day?
What time do you wake up?
Do you go out?
Where do you go?
With whom?
How do you get there?

Uses laptop with pre-populated questions from NDIA
Following questions are for all types of disabilities 5-65 years, some questions may not be appropriate for individual but are to be asked anyway.

Do you have any trouble standing for 30 mins?
Do you have any trouble attending to house responsibilities?
Do you have any trouble learning new tasks?
Do you have any trouble attending community activities?
Do you have any trouble with your emotional health?
Do you have any trouble concentrating for 10 mins or more?
Do you have any trouble Walking 1km or more?
Do you have any trouble washing/bathing yourself?
Do you have any trouble dressing and grooming?
Do you have any trouble speaking with people you don’t know?
Do you have any trouble maintaining friends?
Do you have any trouble managing day to day activities?
Do you have any trouble managing day to day tasks in the last 30 days? (how many?)
Anything you couldn’t do in the last 30 days?
What level of schooling did you complete?
Any post schooling study?
Do you live alone/ with others?
Public/private rental or owned?
Are you employed?
How long since employed?
Are you looking for work?

Income Questions
What type of income do you receive?

Do you require support with…..
Educational studies?
Do/have you any compensation claims?
Are you able to choose who helps you?
Are you able to choose what you want to do?
Who makes the decisions for you?
Are you able to advocate for yourself?
Do you want more choice and control over your life?
Do you require support with domestic and community tasks?
Do you require support with personal care?
Do you require support with travel and transport?
Do you require support to communicate with others?
Do you require support with getting out of the house?
Does the support you receive meet your needs?
Would you like to get out more?
Do you require support with finances and money?
Do you require support with reading and writing?
Do you require support with accessing and using technology?
Do you require support with self-advocacy and participation?
Do you require support with increasing activities of daily living?
Are you able to call someone if you need help?
Are you happy with how often you see family/friends?
Do you care for others?
Do you have any friends outside of support services?

Are you happy with your home environment?
Where do you see yourself living in 5 years time?
Do you feel safe where you currently live?
How would you describe your current health? (excellent/good/fair/poor)
Do you have regular G.P?
Do you experience problems accessing health care services?
Have you been in hospital in the last 12 months? How often?
Do you feel safe in the community?
Do you have the opportunities to learn new things?
Do you want to access education, training or develop new skills?
In the last 12 months has there been any opportunity to learn new skills that you weren’t able to attend?
Do you spend your free time doing the things you want?
Do you volunteer anywhere or have any community connections (cultural/religious/disability)?
How often do you have a say in the supports you receive?

Family Questionnaire
Do you have a guardian?
Do you receive help planning supports?
Who would you like to help you with planning of supports?

(THIS IS WHERE LAC PLANNER INTRODUCES SUPPORT CONNECTION, SUPPORT COORDINATION AND HOW FUNDING OPTIONS- NDIA, SHARED, SELF-FUNDED)
- Not obligated to make a decision on the day. Can inform LAC planner when they call back a few days later before sending plan to NDIA
Do you worry about people taking money from you?
Do you need help managing money?
Do you receive a mobility allowance?
Have you ever declare bankruptcy?
If you choose to self-manage can you anticipate any problems that may arise?
Is your current disability as the result of an accident?

Do you agree to sharing your plan online with providers? (personal details, NDIS number)
Who would you like to share it with?
Do you currently use aids or equipment?
Do you think you might need assistance aids in the future?
Do you use any continence products?
Are you a recent school leaver?
Do you want to work?
Do you have any worries with anger?

LAC planner then reads NDIS disclaimer statement talking about reasonable and necessary requests, mainstream, formal/informal and community supports.

Are you receiving help now?
Who are you receiving it from?
How often/how many hours per week? (have this figure before the plan meeting)

Support worker is given the opportunity to speak about support provided. Some useful tips is to include:
How long consumer been with service
How often/hours per week (include travel, case-notes, phone calls, coordinating supports etc)
Areas of current support (any assessments/reports you have eg: psych assessment; if you have an ABI you could provide a psy/neuro assessment; if you have an OT assessment you could provide this etc)
Advocate that current support is minimum consumer requires to maintain wellbeing, ask for more

LAC Planner
What do you want?
Outline goals?
How often/hours per week?
Summary of goals
LAC planner advises a report shall be written and a follow up phone call to consumer 3-5 days later to discuss plan goals, check if correct, request to add more to plan, plan sent to NDIA for approval.
Send through any additional evidence not provided at planning meeting before LAC planner completes report
Once NDIA approved Consumer shall be sent a letter informing them of outcome, before LAC is even aware
Consumer asked if plan wants to be shared with providers? (YES if you want SP to be aware of what’s happening, otherwise you can choose how much or little you share with a SP)
*Ask for LAC planners email and phone number*
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