Family and Caregiver Schizophrenia Discussion Forum

In Home Supportive Services


#1

Hi everyone. Do any of you have experience applying for In Home Supportive Services for your mentally ill loved one who lives with you and whom you take care of?

I recently had a terrible experience when they came for the home visit to determine what services he needs that I provide.
I can give details, if anyone is interested.

After the shocking experience of the person’s assessment, I talked on the phone with my psychological counselor of over ten years, who has, all this time, assisted me in determining what I need to do for my son and how I can manage to do it.

He said it sounded like the worker was bad at her job and encouraged me to write them and contest what seems to be a faulty and thoughtless appraisal of my son’s needs. So I am working on that.

But, as I am isolated here where we had to relocate a year and a half ago, I thought I would reach out to this online community to find out if any of you have had experience with IHSS. I would appreciate anything you care to share about this.

Thank you for reading this, and bless you on your path.

ILoveMySon


#2

We have not had an in-home services assessment. There have been a couple of times where someone kind of missed or overlooked something I felt was important. I just write polite letters or call and speak as politely as I can to my concerns.

There is a list called The Activities of Daily Living. Fill it out; see if your son will fill one out as a self-assessment. What people need for in-home services is so basic and demonstrable that it seems you will be able to correct this.

Vent here as much as you need to. If you get it out here, then you can be polite and calm when advocating for your son.


#3

My SIL had a really bad experience with In Home Supportive Services. Her son has autism and is non-verbal. She had been unsure about allowing anyone into their home based on stories she had heard. She contested several things as your counselor has suggested.


#4

Thank you, Here and here. I appreciate your reply.
I am able to remain polite and respectful while advocating for him.


#5

Hi Hope,
Thank you for your reply.

Sometimes we do need to contest things. I find it difficult, as I have always been a push-over, but I guess it’s time to learn.

Bless your sister and law and your nephew. I hope it works out well for them.


#6

It’s pretty hard for me to stay calm, but the last time I met with someone very kind and highly qualified, I did stay calm. I was able to say really simply, “Due to everything we have gone through, I have no objectivity about [my son’s] illness.” He was sitting beside me when I said it.

But I did hand over the ADL’s list because that is based solely on observation, not opinion. And I had asked my son to look over it and correct it if I had made a mistake. We are in a really good place right now, so that is possible. (In the past, well, past is past.)


#7

No, but that sounds like something for the elderly to me. I am interested in hearing your experiences. I’m sorry it doesn’t like things went well.


#8

My temperament is such that I will retreat inside myself if I get upset. I have a hard time standing up for myself or my son, when I feel that we have been unfairly treated. I become paralyzed. When I can get through that, I might go away and cry. What I usually do is try to find another solution that I can provide, myself. It’s been a problem since childhood, when no one stood up for me and I didn’t learn how, and I have failed my son many times, because of it. I am trying to fix that.

But I am able to be objective about my son. I speak to my counselor about him every week, and his role is to help me to see things objectively, and to know what to do, when I need to. What a God-send. He knows my son. He used to see him weekly, when he came for our apt.

The worker asked him two questions to determine how mentally clear he is: his birthdate and the president. He knew his birthdate. His answer about the president was “Trump?” He answered as a question, because he wasn’t sure. But she then just took his word for everything, and told me that I am doing things for him that he doesn’t need.

My son does not have clarity about his needs and abilities.

He suffers from social anxiety to the point where he will refuse to go pretty much anywhere, and he insists I go in to all his appointments with him, even physical exams by the medical doctor. He will not go in alone. But when she asked him if he has anxiety, he said no.

We tried to teach him the bus route to his psychiatrist, riding with him many times. But when we let him finally go alone, every time he would get off early and get lost. Never was he able to get to his apt. But when she asked him if he can take the bus to his apts. and go alone, he said yes.
He has severe dyscalculia. For this reason, he has a payee, and I am it. He cannot read an analog clock or handle money. He cannot figure out how much he can buy with $5, at the minimart, when he goes in to buy a drink and a snack. He often has them ring up more items than he has money for and they have to void the sale and help him choose what he can pay for. This happens all the time. But when she asked if he could go and buy his own groceries, he said yes.

He does bake frozen pizza, make ramen noodles, make boxed max and cheese, and chile with a can of beans, ground beef and chile powder. But he often puts food on and goes outside and forgets about it. I have to keep an eye out, because he is always filling the house with smoke and setting off the alarm. He burns pans so badly that it takes many attempts to get the black out. He puts the pizza in the oven without a pan and the cheese drips on the oven floor and burns, but he’s not around, so it continues, causing smoke and alarm. He caught the toaster on fire by putting in corn tortillas and leaving. They caught fire and so did the top of the toaster. He had a glass bowl touching the stove flame, and the bowl exploded. But when she asked if he could cook his own meals without supervision, he said yes.

He vomits often, and I often find it on the floor, or splattered on furniture, or maybe he tried to vomit in the toilet, but from a standing position and it’s everywhere. Sometimes he does a weak attempt at cleaning, but it always needs a lot more cleaning to actually be clean. It’s not just my opinion. We had housemates for years, and his dad knew it, too. People would complain to me. I have cleaned vomit from the ceiling, and all the furniture in his room. He vomited on the oil filled electric radiator and let it cook on it, which made the smell strong. He wouldn’t clean it or let me clean it, until I got to sneak in there and clean it up a week later. He doesn’t clean his area, in his room or outside. The dirt piles up. You can see a wide dark trail where he walks, from spilling his drinks as he walks, and the floor of around his sitting area is covered in tobacco, cig butts, ashes, and wrappers. His little table and the shelves next get full of used cups with tea bags drying in them, glasses, dishes, most with drying food. He thinks it’s all just fine. When she asked if he can clean up for himself, he said yes.

I am always trying to get him to do better. But this is how it is, so far. And this is when he takes his meds. He sits and smokes and drinks beverages all day long, listening to music on his phone, often laughing to himself.


#9

Yes, those things you are writing about are the activities of daily living and they are completely objective. Everything you wrote here about cooking and taking the bus, etc etc can go to the Home Services place in letter form when you request a reassessment, which you have a right to do in most cases like this.

Everything you are writing about is similar to my family member who is doing great in treatment. Yes there are good days when nothing catches on fire during cooking, but we always have to make sure stove is off, doors are closed, there is no metal in the microwave etc etc etc etc I mean, things go awry that I could have never even thought of in advance.

That’s what I’m talking about that is not up for any type of “subjective” interpretation. Here is a form: https://www.alz.org/careplanning/downloads/lawton-iadl.pdf

I don’t stand up for myself either, but I sometimes break down and cry in situations like the one you were in if I am unlucky or not having a good day. That’s why I filled out the list of ADL’s myself and handed it over for the team to respond however they see fit. My lack of objectivity has to do with what my family member might be capable of in the future with effort and support, which is something I have no idea about. I honestly believe that my family member is extremely capable, but I also know 100% for sure that the last few times they tried to take the bus, they could not do that and there was a great deal of stress involved.

Once my family member got into an argument about what day it was with a provider doing an assessment.

It’s really good that you can articulate this stuff and keep track of all of it because even if it doesn’t work out now, it can in the future.

I think lots of providers don’t really understand the cognitive deficits of sz. It’s not like a developmental delay with overall delay. Many people who have sz are super intelligent (my family member included), but have a few cognitive deficits caused by the illness that make daily tasks harder. That’s something you can also educate the providers about; I usually just compare past ADL’s prior to the illness to present in order to show that the deficits in functioning come from the illness. As in, my family member could ride the city bus from age 11 until the active start of the illness with zero difficulty and many, many more examples that I also give.


#10

And plus, the woman who did the assessment is wrong. He does need you and what you do for him.

I am sure you are like me and have tried to pull back, and it really really didn’t work out. In my case, when I stopped bringing food and beverages to my family member, they stopped eating and drinking until hospitalization and ketosis and chemical imbalance from dehydration etc etc etc


#11

Thanks. Good ideas. I appreciate it all very much. And the form is good, too. I have been working on the letter since yesterday, and I expect to send it on Monday.

I don’t cry in a bad situation. I become unable to respond, like I am paralyzed. I become stupefied. I then have to work my way out of that, afterward.

I have high hopes for my son’s future. He has come a very long way, in the past decade. They used to say he’d have to live in a locked facility forever, and I was determined that this would not be the case with him. It’s very slow going, but I believe his brain will continue to heal (which is what his pscychiatrist said is happening).

My counselor told me a person needs to know they are safe and welcome, to heal. So that is what I provide for my son. I make sure he has a big yard with a big tree, because nature is so important to him. I make sure to appreciate the gentleness of his heart, and to let him see the love I have for him, in my eyes, my smile, and my words.

To our sons’ continued healing…


#12

Thank you for sharing those beautiful thoughts with us. Nature is so healing. A big yard and a big tree. Simple but true.


#13

I know in some counties you can request a ride along where part of the assessment they actually shadow the patient to see just how much they are able to do in order to get a more accurate picture of their needs. Unfortunately many services like this are difficult to get set-up with. You could also try requesting his care providers to write a recommendation letter for services. I hope this helps


#14

My son’s behavior is the same! I have thought of asking for help but not applied yet. The cleaning is too much for me. I have him taking omeprazole and the binge eating has reduced as has his vomiting. He was recently hospitalized and maybe the med change helped. I started requesting they find a home for him to live in (there isn’t one with his $750 SSI), so maybe that was a wake-up call for him. One day at a time darling. Make your self-care a priority. Praying for you all xoxox


#15

Yes, Mom2, I agree, nature is very healing. My son sits under that tree almost all of every day. He can’t handle fluorescent lights in most places, or muzak in stores. He has the sensory over-sensitivity that is common with schizophrenia, and nature soothes that better than anything, as well as calming his mind. He used to say he feels God’s presence in nature, and I think he does. His favorite nature spot is the ocean, though we don’t get to go there as often as we used to, when we lived in an ocean-side county.


#16

andp, Thanks for that advise. I appreciate it. I wish they had that ride along, here. The person who did the assessment said that he is capable of living on his own, except if he stopped taking his medication, he would be at risk. He is in no way capable of that. She actually said I am doing things for him that he doesn’t need, so they can’t pay for that. That was a shocking assessment. I was so shocked that I had to ask others who know us if it was true.

We are in a different county now, and he has only seen his new doctor twice, three months apart, and it was over a television screen, and sort appointments. We couldn’t even see him clearly. So he doesn’t know my son at all. He actually asked my son why he wasn’t looking for a job, the last time he saw him. That was strange.

I am thinking of calling his old doctor, who saw him for years, to ask him to write. But I don’t know if he will be allowed to do so, since he works for the county and my son’s no longer in that county. I don’t know if the county will object because of possible liability. But I will ask

Here, he had a brand new social worker who did not do a good job and was fired. Now he has been assigned to a great one, but his first meeting with her is today. She doesn’t know him, yet. He wouldn’t agree to meet with her, until today.

I think we may be turned down, this time, because I don’t have care workers to write about him, but I will work on getting them.

I think it may be that the IHSS doesn’t have in place the type of assessments that would accurately work with a schizophrenic. This might require change on a broad level.


#17

Here’s a more detailed packet: http://www.disabilityrightsca.org/pubs/548201.pdf

IHSS can do this; they just need to know what is really happening.

One of my friend’s children with sz has almost complete services because she lives on her own; there might be a difference in their assessments since he lives with you and they basically know you will fill in any gaps.


#18

Thank you for your prayers, and I am praying for all of us, too.

The IHSS is available and schizophrenia is an allowed disability for it. The work in caring for a loved one with this disability can be overwhelming…and thankless, since many schizophrenics cannot even see what needs doing, much less be thankful for the assistance.

If you plan to apply, make sure you collect lots of written corroborating letters from his care workers, so you can submit them.

I love my son so much. I am willing to do whatever I can, and have been for so many years. But I am exhausted from doing it all and also working. My home based business suffers because of all the time and effort I put into his care, and so my income has steadily decreased.
I don’t even know how we are going to continue living in our house, without something changing. This help would have been a Godsend, but the worker who did his assessment said he is capable of living on his own, which is so completely far from the truth. I wish I had collected written statements, myself.

So be forewarned, get your letters to submit, when applying.


#19

It is not only for the elderly, but for all disabilities. It is so people can stay in the home and not be in institutions, which cost the gov so very much.


#20

I am going through the exact same scenarios with my son who is 32. I have come to believe it is just part of the illness and they do believe they can cook, go to store and on and on because who wants to admit you are not able to do those things? It is very frustrating that professionals in the mental health system do not understand this and just work with the caregivers to determine the help the caregiver needs with being a caregiver!!! Plus for my son to hear me acknowledge in front of him that he isn’t ok with doing some things is very humiltiating for him and I would think just the fact you have to face that you have a mental health condition and now have a “label” or a diagnosis is humilitating enough. I was about to place my son into an assisted care home again until the caretaker did her intake and that was all she cared about was what his diagnosis was, what meds he was taking and did he need assistance with personal hygiene, walking ect. Not one question about what he enjoyed doing or who he is as a person. It made me sick so I now have him back in a home that I own where he will live alone but with caregivers around daily… friends and family or whatever I can find. Trying for some help from CDASS or IHSS but after these stories afraid of that now too.