u/the_toast_exemption

I am a Supports Coordinator for adults with Intellectual Disabilities. I have a caseload of 40 across multiple counties in eastern Pennsylvania. Most of my individuals I work with have 'waivers' for services, either home, community, center or group home, with Medicaid funding. Obviously, you don't have to read all of this if you are not interested. But I do think a lot of us can relate to these issues even if you are not in this specific field.

I have to drive out to see, in-person, each individual on my caseload on varied schedules depending on their tier of funding for services (every other month, every third month, every six months) for 'monitor visits'. The majority of them live with their parents, and have to keep doing so until the parents- or often when they get down to one parent who is in their 60s, 70s, 80s, even their 90s-becomes too sick to care for them or dies. Then they get placed in a group home- a jarring life change to go through when they themselves are nearing 'retirement' age.

Apart from how horrible of a system it is to have to be a representative of- (we shut down asylums because they were inhumane but then just shifted the burden of care back onto mothers to care for their disabled children for the rest of their lives, in their homes with minimal outside support because of course we did that in America) my job is actually about five jobs wrapped into one, and the scope of responsibilities is to the point of absurdity:

1- Health and Safety Monitoring (in person)

2- Individual Support Plan manager

3-Service coordination and medical billing / budgeting

4-Scheduling and reception

5-Referrals specialist/ case manager

Job role 1 and 2: In person monitoring, and support plan manager:

For each monitor visit we have to complete 40-50 question 'monitor' tools which are audited, and we can't just click 'yes' or 'no', we have to type a sentence out for each question even if it doesn't really apply or we didn't talk about it. The other thing is once a year we have to conduct these SUPER IMPORTANT meetings with the whole team, to go over the person's Individual Support Plan or ISP. We are then solely responsible for writing up all the changes, auditing the entire document for consistency, and submitting it, where we will often get back multiple rounds of edits from our internal auditor. Most of the families barely read or refer to this document. In residential /group home it is more important but also, a lot of it is redundant to the documentation they are required to keep as a residential provider.

Words cannot describe my hatred for this document, which can be from 20-40 pages long. They have had multiple authors over sometimes decades, are edited in an awful online system where you can't see the whole document at once and just have to click through poorly arranged sections- and the same information is repeated multiple times throughout the plan for no apparent reason. AND this repeated information is audited heavily so the 3 places you have to list all their updated doctor's appointments and doctors has to be typed out in little boxes several times and then has to be internally consistent. And from year to year the auditing rules change so something that may have been in a plan for years suddenly has to be rearranged or taken out for no reason other than the county administrator decided to. I'm not saying we should scrap the ISP altogether just WHY can't it be better arranged and easier to edit?

Job role 3: Service coordinator and medical billing-

We also are the medical billing and coding department. Yes we who chose this field to work with people, not numbers, are expected to add, manage, calculate and track all of these medically billed services- the billable units, matching a frequency and duration of the service, find and enter the billing codes matching the location of the service, and be reviewing the total budget, making sure the annualized service totals of all of the units of services don't exceed the budget. We complete 'critical revisions' every time someone wants to add or remove a service, and have to update the plan in multiple sections with the new service, including coming up with a person-centered outcome phrase, trackable goal, needs description of the outcome/goal, and multiple other requirements for the service.

Job role 4: Scheduling/receptionist-

We are the scheduling department. We are solely responsible for making sure everyone on our caseload of 40 is following their 2,3, or 6 month monitor schedule- calling or emailing everyone to schedule, sending calendar invites, rescheduling, emailing or calling with reminders if they miss or don't reschedule, trying to figure out how to track them down if they 'ghost' us. If someone misses too many monitors, they are not punished- we are. We are 'not in compliance' if the person misses monitor visits. We have to do make up visits if they miss one. With residential providers it's easy- they know they will get in huge trouble if they keep missing, and you can also just show up at a time you know they will be home if you have to. We do not have a receptionist or any admin backup for communication with us. We are told we cannot even take 'flex time' (we are salaried)- we have to keep our phones on, and answer them if someone is trying to get ahold of us. If somehow a client, parent, or provider gets through to our main office to ask something, we are treated like we did something wrong.

But with families, many of them are less motivated. They don't get punished, and many of them don't even like being monitored. I don't blame them- it's paternalistic and punitive. We say as a society-" here's a bare minimum of funding of services to help but we also don't trust that you're taking good care of your adult disabled child so we have to check up on you." We are supposed to do the same things at family homes as residential- check pill bottles, pantry drawers, the kitchen, fridge, bedrooms, bathrooms, to make sure they are being cared for. I and most other supports coordinators don't actually do this unless there is a cause for concern, because of how invasive and insulting it is.

The agency I work for (which actually was originally part of a larger nationwide movement that was largely responsible for shutting down asylums) , frequently makes us do trainings and chastises us for doing 'lazy monitor visits' and always tells us how important our role is to monitor the health and safety of our individuals, how we are their lifeline and the only checks and balances and that their lives are in our hands. Their lives are in our hands! BUT here's the kicker on that-

Job Role 5: Referrals specialist and case manager-

The other role we have in this position, in addition to the medical billing, is referrals specialist and case manager (for services and providers). Which means, if a parent says 'I need a day program , sheltered workshop, day center, or community based staff for my adult disabled daughter' then it is our job to find that program or staff and get it all set up. If someone's parent suddenly becomes unable to care for them, it is our job to make referrals to group homes and find them a place to live permanently. For this reason, we are expected, reasonably so for this specific expectation, to maintain friendly and collaborative relationships with all the providers, especially the big and well regarded ones in the area. We need to be nice to them, and not piss them off, and for them to like us, so that if they have a group home with a vacancy, and we have someone who's mom just had a stroke and needs to be placed, then they will be willing to work with us to set up visits for that person to see the group home, meet the other residents and staff, and move into the group home.

SO- the service providers, especially the residential ones and day programs (sheltered workshops and recreational centers, of where there are very few) have the 'product'. They have the thing that we, the supports coordinators, desperately need. They, therefore, have the power. We have to tread lightly with them, always. We are outright told to do so by our supervisors and directors at our agency. You are probably starting to see the problem. We are technically supposed to 'police' these providers. We are the cops who are supposed to report them if we see them doing something wrong. That is the whole point of the monitor visits. That is supposed to be the checks and balances. But if we report them too much, they won't want to take our referrals.

It's the same problem with how you can basically only get into a group home if your only parental caregiver dies, or is too sick to care for you. The only way we are expected to take a hard line on a provider not properly caring for their individual, is something like the person has to be literally found with a broken leg at the bottom of the stairs at a monitor visit. Or something similarly blatant.

But grey areas or ongoing problem issues are just something we can't do anything about. Providers will literally strong arm you, try to undermine your credibility, and our agency lets them get away with it. If as an individual supports coordinator you report something that you are SUPPOSED to report and the provider starts to get defensive and getting upset at you, doing things like emailing you with a bunch of county people cc'd and saying that you don't know what you're talking about, your claim is unfounded etc, your supervisors will not back you up or support you. They will just let it happen, and won't back you up. There are things a lot of us see regularly which we are just expected to look the other way.

The things we can't do anything about:

The biggest one we see is staffing shortages and neglect. This is a systemic issue. Direct care staff (the ones spending all day with individuals, giving them meds, helping them on the toilet or changing their diapers, showering them, dressing them) do not get paid a living wage. There are not enough workers. They are worked too hard and mistreated by their employers. They are expected to cover shifts and work long hours. Most of them have a high school education. They are minimally trained on med administration, seizure management and other care requirements. Many are women, people of color and immigrants. When staffing gets really bad, it feels like an agency will hire anyone with a pulse and a clean background check.

One local provider was investigated because of deaths due to complications from medical neglect. A person was lying on the ground for over a day, crying for help, and there were no staff there. But this sort of thing could happen at any agency. And I have parents tell me they are worried about their adult child going to a group home some day. I have to reassure them, because what do I say? 'yeah they're horrible places, your kid will get neglected.' They have no other choice. that's where there kid is going to end up one day.

The other big issue I see is group homes using chemical restraint and misusing the mental health treatment system to sedate the residents. Providers like to pretend to be 'super conscious of co-occurring mental health issues' but it is a smokescreen to drug their residents into submission. So to contrast, most of the individuals I work with who are still living with their parents are on either zero, or maybe one psych med- and usually something mild, like a low dose of an antidepressant. They are actually almost all sedated in some fashion already, actually, because most of them have seizure disorders, and seizure meds are sedating. Almost all of the individuals I have in residential care are on one, two, or many more psych meds- and not antidepressants, heavy duty high dosages of mood stabilizers and antipsychotics- this is IN ADDITION to their seizure meds. I had one woman who was minimally verbal and she was taking 6 psychotropic medications including benzos, antidepressants, antipsychotics, ambien and melatonin.

Many of these individuals are nonverbal or not verbal enough to advocate for themselves. Can they really consent to taking all these meds? Can they accurately report how they are making them feel? If the only person talking to their psychiatrist is their residential staff - the people I just described above, who are overworked, underpaid, and underappreciated- and sometimes hired out of desperation- is that person an unbiased advocate for what is best for the individual being medicated?

I also feel like providers take advantage of the current heated climate regarding mental health awareness, and pharmaceutical overreach. We are so polarized in this county, that you can't have a discussion about nuances or difficult situations relating to mental health like with our clients. A lot of people in this field lean super liberal including myself. I feel like there is a knee jerk reaction to any critical discussion about psychiatry that is you say anything bad about mental health treatment or psych meds that many liberal people may assume you have ill intent, that you are some kind of super conservative antivaxxer. They shut you down and end the discussion. This is not helpful, especially with this population, where they are vulnerable, often nonverbal or not verbal enough to communicate their needs, and so at risk for over-medication or inappropriate mediation in this area. I feel like residential providers know this and take advantage of it.

The woman I mentioned, with the 6 psych meds? She had a diagnosis of bipolar disorder which both her sister (her parents had both passed away) and I thought was not accurate. Honestly ADHD may have been more appropriate. But her residential providers would throw around 'she's bipolar' in the same condescending and dismissive way that I feel like 30 years ago they would have said 'she's retarded'. Any time she got upset or agitated they would sigh and roll their eyes and say 'oh she's just MANIC again' and ask the psychiatrist she saw (for 15 minute telehealth med management- again...for a minimally verbal woman) to up her meds. The worst part? It later came out that this whole time, her housemate was verbally abusing her. Like, mercilessly taunting her and yelling at her and calling her names, following her around the house making fun of her. It got to the point that they had to start filing reports. But they never were held accountable. Nothing was done about the fact that they were covering abuse of a minimally-verbal individual, by a verbal individual, by asking a psychiatrist to keep upping the victim's meds to sedate her into not reacting to the abuse. I'm still trying to move her out of this home and they are resisting me the whole way. They have gone to tours and told potential new staff 'oh you don't even want her. she's a handful'. She still lives there. It's been over a year. My supervisors don't care.

As another interesting contrast, I have a few individuals living in the much better-funded and better-staffed ICF/MR program (intermediate care facility/mental retardation- yes they never bothered to update that term for it). Two separate psychiatrists working for two different programs like this in two different counties, actually tapered these individuals off the psych meds they were on because they had become more stable. The one guy, minimally verbal, came in to his program after a near-fatal accident where he was literally shot in the head. He had a ton of surgeries etc and ended up on a lot of psych meds because of all the stress.

But he moved and gradually settled down, became more stable medically and emotionally, and the psychiatrist gradually tapered him off all his psych meds. He was doing great and perfectly stable. I asked his staff the reasons for tapering and they reported the psychiatrist said, people should not stay on these meds long term if they don't have to. She said that for nonverbal individuals, especially with other health issues and neurological issues (again, I'd say about 80% of my caseload has seizure disorders), the psychiatrist was saying that best practice is to avoid adding on other psych meds, especially long term, due to complications. One of the biggest differences here is this psychiatrist WORKS for the ICF/MR provider. She could see this man in person frequently. She had this job specifically because she was trained in and understood working with this population. The other psychiatrist, the telehealth one, was a general community mental health psychiatrist.

As a final note about neglect and restraint, another thing I see happen, something that is really sad, is that these individuals are not really integrated in the community at all, again, especially at group homes, and the staff park them in front of the TV all day and ignore them. To me it feels like even though theoretically some individuals can have great, well rounded, meaningful lives within the system, that for many others, it's just better disguised institutionalization - just spread out, and hidden in plain sight. We've traded in the straightjackets and chains for Valium and television. Every year I have to have every individual on my caseload sign forms that they consent to their care, and I am mandated to go over their right to report abuse form and hand it to them, telling them to hang it somewhere they can see it. Most of them can sign but can't read, and don't know what they are signing. Most of them don't even understand the words I am saying when I describe the various forms of abuse listed on the form. We pretend to be so evolved, so morally upright in how much better we treat people with intellectual disabilities. But really we just made it look a little prettier when you glance at it, and less obvious.

Edit: formatting, clarity