This is such a good point! I'm glad you're thinking about this, and that you're interested in directly getting people money to hire a personal care attendent (pca) or home aide for themselves is great. Sometimes people post about their searches for disability help in
https://www.reddit.com/r/disability/ and
/r/DWPhelp.
@Manaaja I don't know what your local situation is like, in the U.S. many places have disabled people's groups running Centers for Independent Living who can be real lifesavers, and there's also good guides written up at
A financial survival guide for people with disabilities and chronic illness.
howtogeton.wordpress.com
, the author and commenters and associates seem like really helpful folks to reach out to. <3
RE: Food banks, they have access to deals and sources that we as individual shoppers don't see in stores, so giving a food bank a dollar goes a longer way than dropping off a can :)
(Sorry that my reply is really long and vent-y.) Thanks for the reply and for offering help! I appreciate it.
However, I live in Finland. My problem is that I have asperger and ADD which cause me to have sensory issues, social anxieties, attention problems, problems with starting things and finishing things, etc. and there's no asperger specialist or anyone who knows a single thing about asperger anywhere in a 100 kilometer/mile radius, so despite the fact that there's a lot of psychologists and psychiatrists in my area I had to travel to the capital to see a woman who knows about asperger.
She wrote my psychologists/psychiatrists an official paper telling them to get me a special caretaker, who knows about asperger, and who'd meet me several times a week. I was so happy to finally get help! She promised me that the caretaker would help with things like studying and working, social anxities, money problems, eating and food-making, going to grocery and clothing shopping, defending my rights and being a spokesperson for me etc.
I waited 2-3 months without hearing anything about the caretaker thing, until one day when I asked my psychologist if they have heard anything about it, they had the audacity to reply "I think I heard a doctor in passing by say that you can't get one, because in this "state" [a huge "state" with a big ass population ffs] only people with real problems like missing legs or blindness can get one.". This is Finland's health care! "I THINK I HEARD IN PASSING BY"! THE DOCTORS DIDN'T EVEN HAVE THE GUTS TO COME AND TELL IT TO MY FACE! AND THEN ALL OF THEM CONVENIENTLY FORGOT THE WHOLE THING AND NEVER SPOKE OF ASPERGER CARETAKERS EVER AGAIN! Even the psychiatrists and doctors don't take my asperger and ADD seriously.
To add, I have had some free social workers visit me for years, but they are intended for normal depressed people or just people who are lazy or have physical problems (a young man who doesn't want to wash his clothes or an older woman who needs help changing the lamps) and thus they know nothing about asperger or ADD and it's pure hell. I could write a book about how bad they are (maybe I'll make a new thread if I manage). They refuse to drive me to a shop and I'm not allowed to give them money and ask them to buy for me, so I'll be without food or medicine like today. (God, I wish someone would bring me good and meds, my fridge is pretty empty).
This newest social worker is the worst. When I suggest to her "Could we do this?" she'll say "You can do it alone!". I have trouble paying my bills in time, she won't help. She'll cancel meetings. First it was "My back hurts so I don't feel like driving to your place!" (she should have taken sick leave and get someone else to come meet me or eat a few painkillers). Then "I don't have any other clients near your area next week, so I don't feel like driving to your place, so let's just cancel our meeting!".
When I later texted complaining to her that I don't want her to cancel our meeting because I have money problems, it was once again pure hell. Despite having a life long disease, I need to send some papers to Kela (the ones who give me my money) every year. I've always told them I have no savings (I have small savings, but I've heard that even tiny savings can prevent you from getting any money no matter how poor you are), but this was the first time they've basically requested me to hand over my bank passwords so that they can see how many accounts and how much money I have. I went into full panic, my life is shit and now I'm gonna be penniless and homeless too when Kela sees that I have more than 0€ and will probably stop giving me money for rent and food. Did she show sympathy? Fuck no! She informed me she's now on a 3 week sick leave and will turn the phone off so that I won't bother her. And to make me angry, she had the nerve to say "Not a single social worker will help you in lying to Kela." I wasn't asking for help in lying! I was asking for help in what to do now that Kela wants to see my bank accounts!
The worst is that some time ago I had to move away from my dear old home to this new apartment. Old one had mold problems and my health problems were so bad I just took the first apartment I could even though my gut feelings told me not to. I should have listened to my guts. There's a really busy road right in front of the apartment, so I can't sleep in the bedroom. Like a dog in a tiny cage I have to sleep in the hallway on the floor, because it's the farthest place from the road. Worse yet, the air conditioner VVVMVMVMVMVMs day and night and if there's one thing my asperger can't take, it's the noise of a loud air conditioner. I have to wear noise-cancelling headphones day and night. It hurts my ears, but every time I take them of, all the noise starts hurting me so much I start to self-harm in mere seconds (not cutting but punching my legs and arm and stomuch, hitting my hands, punching and slapping my head, not washing, not going to toilet, pulling my hair. I get panic attacks. I can't sleep. I'm so sleep deprived I see hallucinations (I only see hallucinations when I'm really sleep deprived). I see nightmares. And my migraine came back. (I get migraine from stress and sleep deprivation).
For weeks I've begged the social worker to help me in some way (either by doing something to the noise or by helping me move away and get a new apartment), but she refuses, calling me whiny. I tell her how badly I'm doing and how I self harm, I tell her I can't sleep, I tell her my asperger and sensory issues make it impossible to live in here. She still doesn't take me seriously. Most people I have met think about asperger either:
A: "Doesn't exist, it's a made-up condition, not a real disease. It's just an excuse to be whiny, ungrateful, lazy etc.". My family and current social worker use this one.
or B: "Aren't all aspergers stupid, coldblooded serial killers with no sense of humor? But you're not a stupid emotionless murderer without a sense of humor, how can you have asperger? I don't believe it! There's no way you have asperger!" A lot have used this one too.
So if by any chance anyone donated money so my area was able to hire an asperger specialist, I'd be happy.
PS: If there's ever a permanent cure for asperger, I'll take it (though I have already tried to ctb so many times these past weeks alone by unsuccessful ropings, so I guess it's too late for that).
