Family and Caregiver Schizophrenia Discussion Forum

Government Program for caretakers of the severely mentally ill

Sometimes I wish there was a government funded financial assistance program for the caretakers. It’s a lot work, and it affects your life professionally, personally, mentally, and of course it affects your health. How are we supposed to work full time and be there for our loved ones 24/7?

State hospitals are now far and few in between, and the waiting list to get into a group home or some type of assisted living facility is a mile long. I just feel like for the ones who are severely ill, they should be supervised around the clock. Kind of hard to do when you’re working, and trying to pay the bills.

If they’re not going to build more hospitals or group homes, or more treatment facilities, and they’re going to put the responsibility on a family member, there should be some sort of compensation. Not fair.

I know this will never happen, just wishful thinking…

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My apologies in advance for responding. There actually is a program that pays people to take care of family members that meet the qualifications of need. My brother had to quit his job to take care of his adult son with autism. His wife had the higher paying job, she continued to work. Their son had aged out of the school system (lots of official documentation there regarding his limitations and was removed from the development disorder work program for attacking an instructor (more documentation) attacking an instructor made him ineligible for the day drop off program. During some sort of home needs assessment visit, the social worker became aware that they had to lock up all of the food in their house, pantry and refrigerator (the refrigerator had chains and a padlock) their other son had to arrange his college schedule to help cover the gaps in his parents work schedule as his older brother could not be left alone in the house for even a minute. During the assessment, my nephew stomped around the house agitated, checking the refrigerator and pantry locks while yelling “GO NOW” at the social worker.

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This is interesting because I do not know anyone who is familiar with this and personally do not know of such a program. Even the head instructor @ NAMI seemed unaware and puzzled when this subject was brought up in one of the support groups. I’m sure a TON of criteria has to be met, along with irrevocable proof that the MI can’t be left alone. I wonder why more people are not aware of this program. I belong to another support group and the main underlying complaint and source of anguish seem to be how difficult and nerve wracking it is caring for the sz, never knowing what they may do next or just simply their sometimes disruptive or violent behaviors. You would think it wouldn’t be that difficult to prove that person can’t be left alone.

Off topic, I always felt my son was borderline Aspbergers, although he was never tested. I believe autism and sz do go together, and the characteristics are so similar. I believe autism is the beginning of the more severe cases of sz. But I don’t think every sz started with autism.

Yet there is so much support for autism and people embrace and accept autism. Not so much for sz.

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Oh, here you go: https://ehsd.org/elderly-disabled/in-home-supportive-services-ihss/. This In Home Supportive Services Program helps to pay for services to eligible aged, blind and disabled individuals who are unable to remain safely in their own homes without assistance. I was just informed of this program by my son’s treatment team. I called the number and generated an application over the phone - super easy as my son is on SSI and in the system. The paperwork came shortly after the call. I have 30 days to have his doctor fill out the application and send it back or it expires. I’m currently waiting for the psychiatrist to fill out his portion. Once they receive the application, an interview is scheduled. I have a friend that works with IHSS and she is going to help me ace the interview. I heard they’re tight with hours and I think the pay is somewhere around 12. here in California. I’ll keep you posted on the interview process. Xo

I don’t know how to tag people, so I hope you get this - I just hit reply.

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I linked you to California IHSS, google your area - it’s in all states.

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@skyler.hayden, I’m not sure I would qualify, I’m not blind, disabled, and I’m not in the “elderly” category, just yet :wink:

Also I have my own business, and I’m pretty sure my income would disqualify me instantly. Also my son does not live with me.
But thank you for the info! I will check it out and look for something like this in my area. And good luck on your interview! Xo

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It’s definitely a program to keep the loved one, that is blind/disabled in their home - even if that is not with you. The government pays a loved one/worker to assist with medication management, cooking/meals, grocery shopping, cleaning, doctor’s appointments, ect. My salary is not even part of the equation. The services are for the disabled and our loved ones qualify.

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I keep meaning to check this out, every little bit can help. I probably dedicate at least 10 hours per week in support of my son. He is not comfortable with anyone else coming into his home, so it is hard to consider outsourcing this to anyone else, at least for now - so it would be at least some compensation for the all the time I give in support of him. If it is tax-funded, then, hey, I pay taxes, so I feel I should make use of it.

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I dedicate so many hours and yes, every bit helps! I’ll let you know what I learn regarding what to verbalize at the interview to maximize approval for the most hours.

Xo, Jen

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Seriously!!
It’s insane
That would be ideal!!!
I mean here I am juggling school while trying to take care of my partner…
If only there was support!
I get ihss right now
Barley anything!
It is not enough to make it on

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Here’s something I just found through googling. I haven’t read it yet myself.

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They only improved 13 hours a week
Which turns out to be a supplemental 600$ a month

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How many hours did they approve you? And which state do you live?
Also any advice on getting more hours?

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I’ll take it, better than nothing for sure! I’m meeting with someone that is going to help me interview well and get as many hours as possible. She said there are ‘buzz words’ that I need to articulate.

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I’m in California, you? I’ll let you know the ‘buzz words’ for sure!

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Yes same here
I stay in Santa Cruz
Buzz word is suicide watch for max hours

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Very true
But it’s be nice to make my caregiving experience full time
Then it’d be amazing
I mean I provide more care sometimes for my partner than I do with my other clients I work full time…
You see what I am saying here?

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Interesting, I’m going to read through this! Thank you! Xo

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I literally can’t believe I still have a job because I spend so much time researching and care taking for my son when I’m at work. I spend more hours on my son’s care than anything else in this world, it is truly a FULL TIME JOB!!! Maybe I’ll find something good reading this Circle of Care Guideline. I’ll let you know!

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Lol, I agree - as I type this at my desk at work.

I’m wondering if I would be able to get on with this program, since I am my son’s guardian. From what I read, it is for “people who can make their own decisions about their care to choose family members”.

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