My Experience Being on Disability Benefits #Write31Days

Welcome to day 3 in the 31 Days of Autism. Today, I want to wrote about employment or the lack thereof.

I never worked. I didn’t even have a summer job as a teen. I even only babysat for the neighbors once when my sister was ill. When I had to write a resume in college, I put the few barely-active E-mail lists I owned on it, LOL.

When I was seventeen, my parents told me I hd to apply for disability income. I was told it was just to make up for the work non-disabled college students do besides studying. This may be one reason my sister is still a bit jealous, as she never worked and hence didn’t have an income in college (other than her student loan).

I never had any trouble going on disability. I didn’t even have to meet the social security agency’s doctor or employment specialist face-to-face. It was all handled by a simple phone conversation with me and my parents and a few bits of information from my family doctor.

Note that I hadn’t been dagnosed with autism when I was first approved for disability in 2004. Once diagnosed, my support worker wrote a letter to the social security agency informing them of several things: I had been diagnosed with Asperger’s Syndrome, had dropped out of college and had been admiitted to a psychiatric hospital. I probably would’ve had to notify the social security agency that I’m no longer in a hospital, but I don’t know how to go about this.

In 2010, the law on disablity income for people who were disabled from childhood on was revised. I don’t know what was changed, but I heard that at least there was talk of not giving people disability benefits from age 18, instead moving the age threshhold to 27. I wasn’t yet 27 by that time, but maybe those already on disability were exempt. Also, those in institutions were talked of being exempt from this rule, and I obviously was.

In 2015, the Participation Act went into effect. This means people won’t get disability payments if they can do a task that is part of a job (instead of being employable in an actual job), have basic employee skills, can work for at least an hour on end and can work for at least four hours a day. In any case, it’s extremely hard to go on disability now. I was still institutionalized when I received the letter at home saying I had no employment potential. My husband jokes that the letter was full of zeros.

Before I’d received the letter, I had worried incredibly. Now that I checked an explanation of the components of employment potential, I’m worried all over again. A Dutch law firm states: “If you wash the dishes at home, you may have employment potential.” This was nuanced a bit to say that, for example, if you volunteer in a sports club cafeteria doing the washing up, this counts as a task. Interestingly though, I don’t think effectiveness or speed are counted in, but they do play a role in the one-hour and four-hour rules.

Many people I know, even those requiring a lot of support, are not approved for disability income under the Participation Act. I am just so glad I am.

7 thoughts on “My Experience Being on Disability Benefits #Write31Days

  1. “When I had to write a resume in college, I put the few barely-active E-mail lists I owned on it, LOL.”

    You were ahead of your time, Astrid. It showed a lot of community participation and commitment and a willingness to embrace the online world and its challenges and opportunities. And you were a power user.

    “When I was seventeen, my parents told me I hd to apply for disability income.”

    The schema was moving around a lot. I was entitled to child endowment and to educational benefits through time, and what income was there transferred from the parents to the child/adult. There is Carer Allowance and Carer Payment and Child Disability Allowance. In Australia, too, blind people get the Disability Pension with no questions asked. This happened to several acquaintances of mine.

    “I never had any trouble going on disability. I didn’t even have to meet the social security agency’s doctor or employment specialist face-to-face. It was all handled by a simple phone conversation with me and my parents and a few bits of information from my family doctor.”

    Now I understand why Sigrid was jealous! There are private people to whom a general practitioner may refer for more information, especially if you are healthy and you need a little updating and re-tuning for vocational purposes.

    “Note that I hadn’t been dagnosed with autism when I was first approved for disability in 2004. Once diagnosed, my support worker wrote a letter to the social security agency informing them of several things: I had been diagnosed with Asperger’s Syndrome, had dropped out of college and had been admiitted to a psychiatric hospital. I probably would’ve had to notify the social security agency that I’m no longer in a hospital, but I don’t know how to go about this.”

    Centrelink – the Australian social security super-agency – is very strict about people being in and out of hospitals and overseas for more than 13 weeks in a year. And respite also. Support workers and their documentation are important especially about the last two things [changes in your circumstances since the first/last time]. Do they follow your ID number about? In several European countries this does happen.

    “In 2010, the law on disablity income for people who were disabled from childhood on was revised. I don’t know what was changed, but I heard that at least there was talk of not giving people disability benefits from age 18, instead moving the age threshhold to 27. I wasn’t yet 27 by that time, but maybe those already on disability were exempt. Also, those in institutions were talked of being exempt from this rule, and I obviously was.”

    This happens in group home situations and other situations of assisted living where there is State and Federal support. Resources for youth and young people would be important in this context – disability support is seen as a terminal path? Lots can and does change between 18 and 27 – takes in a lot of the major mental health stuff and physical impairments like cleft palate as well as late-emerging hearing loss/impairment. And acquired brain injury, of course.

    Now this Participation Act of 2015:

    “In 2015, the Participation Act went into effect. This means people won’t get disability payments if they can do a task that is part of a job (instead of being employable in an actual job), have basic employee skills, can work for at least an hour on end and can work for at least four hours a day. In any case, it’s extremely hard to go on disability now. I was still institutionalized when I received the letter at home saying I had no employment potential. My husband jokes that the letter was full of zeros.”

    Lots of similar changes in the 2014 May Budget in Australia – this affected people under 30 or 35. And one-hour employment is the minimum – though anything between 1 and 15 hours – and 30 hours a week. J has a great sense of humour!

    Though that letter reminded me of when in SMILING AT SHADOWS Dane Waites got all black circles for a similar outcome. Granted he was 6 years old and he was at a very famous autism-specific school.

    “Now that I checked an explanation of the components of employment potential, I’m worried all over again. A Dutch law firm states: “If you wash the dishes at home, you may have employment potential.” This was nuanced a bit to say that, for example, if you volunteer in a sports club cafeteria doing the washing up, this counts as a task. Interestingly though, I don’t think effectiveness or speed are counted in, but they do play a role in the one-hour and four-hour rules.”

    I don’t wash the dishes at home or anywhere else – the last time I did this was in the 1990s in a sound-proof kitchen. And I would probably lash out. The “sports club nuance” is probably appreciated. In recent times doing anything vertical has provoked dizziness particularly in unfavourable conditions.

    Josh Bernstein is one person who looks at this in employment law especially when it comes to effectiveness and speed. Those two come in under the Supported Wage System and/or the Business Wage.

    Might be a good idea to keep documentation of tasks, taskables and actionables and conditions for those people to apply. Like restrictions on driving and the other major life activities.

    “Many people I know, even those requiring a lot of support, are not approved for disability income under the Participation Act. I am just so glad I am.”

    Liked by 1 person

      1. Many rooms – indeed all rooms – can be made soundproof, SwtSpontaneous.

        This was at a college and/or a university in the 1990s.

        Acoustics are terrible aren’t they! And they do matter – a lot.

        There are lots of books and guides on how to make your places sensory-friendly and purpose-built.

        Liked by 1 person

    1. Thanks for your extensive reply. I can in fact do the dishes at home (by hand, we don’t have a dishwasher), sort of, sometimes. It’s one of only a few Household tasks I do.

      As for the age threshhold for disability under this act being raised to 27, that’s not to account for acquired disabilities, because this law applies to those who were disabled before age 18 (or sometimes those who became disabled during college) only. The reasoning is most likely that full employment potential may not be reached by age 18.

      Like

  2. I don’t know what country you are in but this was definitely a very interesting read to see all of the different disability laws and how they affect communities and individuals! Your husband sounds like a funny guy!

    Liked by 1 person

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