Beds on Paper, Nowhere in Reality

I will start here, this account is long so please be patient and bear with me. I have to say my disappointment is great, and I am very concerned. This was sent to the governor, lt. governor, both my state representative and state senator, and my state's DHHS head for mental health services. To date none have responded, which is sad.

 

In 2013, my son was diagnosed with schizoaffective disorder. At that time, he had two voices in his head, hallucinations (auditory and visual), and was extremely depressed. I am thankful for the specialized university-based early intervention program that worked with me and with my son with cutting edge research, and after many drug and supplement combinations, he was stable. This took about 4 years. He entered and completed a structured residential and vocational rehabilitation program designed to help adults with mental illness build independence, but upon completion, when he searched for housing, there was none within his price range, and so he came home. He still had a part-time job where he lived, and another one as a dishwasher. Then the COVID-19 lockdown happened. This was 2020, he lost both jobs, and gained another voice. Not a good thing when you already have two. After additional meds, further therapy, he has remained mostly stable, yet there are days when the voices are loud (some days yelling, some days banging pots). I have observed that sunspots and full moons, and severe changes in barometric pressure all affect his fragile brain. He is currently on 10 prescription medications and almost as many supplements (his doctors requested we use these supplements, and we do not get reimbursed for this expense; some of the supplements, if not taken, cause his voices to be loud and the cat to talk to him). His last hospitalization was in 2018 for 8 days.

 

Now you have the abbreviation of his history; the next part tells of the great disappointments that have occurred.

 

As my husband and I are aging (68 & 69) we, as well as my sons siblings, began in 2021 to have hard and difficult conversations around what we could do to best provide for our son when we are dead. We have 2 daughters and one other son. They are all doing their own life as would be expected (our disabled son will be 30 later this month). We began the task of trying to find an appropriate situation for our son, knowing his limitations and looking for him to have his best life. Needless to say, we were sorely disappointed.

 

I contacted our area’s behavioral-health authority and expressed my concern, and was told at that time there were 134 beds in our county (our current residence), and was promptly brushed off with a list of all facilities in our county that were under the Mental Health umbrella. Again, the disappointment after spending several days plus calling and checking out websites, I found out there were NONE that would accept someone with schizoaffective disorder. Yes, there were 134 beds, but these were for addiction, developmental delays, autism, veterans, and eating disorders. I used the list provided by our area’s behavioral-health authority, and some of the phone numbers were no longer in service, and several did not answer the phone, and when messages were left, calls were not returned, again sadly and frustratingly disappointing. And they did not follow up with us at that time, even after we shared the information we had found.

 

SO I moved on to our state's DHHS website, and after much digging ( this website is less than user-friendly), I found out about how to register a complaint. And I did send in a complaint. A representative called me back and as we discussed the issue, she was taken aback when I mentioned my son had 3 voices that he deals with every day (the mental health umbrella covers such a vast array of issues but it was again disappointing that this would take staff aback). I was again sent a list, this time it was a 254 page list of Mental health for the state. After 3-4 hours of culling the list, removing all those who dealt with developmental delays, I was left with approximately 892 beds in THE ENTIRE STATE, None in our county as I had already found out. This works out to less than 10 beds per county. I was again disappointed because of the small number, because the list is inadequate in information, because there is no way to contact many of these facilities on the list, again disappointed because this list does not say if there are beds open, filled or how long the wait list might be.

 

I then went back to do a web search, many of these beds are under different umbrella groups like Easter Seals (a large nonprofit organization), or regional behavioral-health networks. And I think are being paid through the state with Medicaid monies. So many of these require a pre-admission online form to be filled out. I did this with varying results. The regional behavioral-health facility have yet to acknowledge my submission over a year later. Easter Seals had only openings in another state, and a regional behavioral-health organization in another city was the only one who put me in contact with a care manager and gave me a direction in which to move forward, however their only available opening was an apartment 2+ hours away from us and further away from his provider, and would only have a case worker check in once or twice a week (with all his meds alone this would potentially cause him to implode and require hospitalization). After going through the process and being disappointed yet again, I received a letter as did my son, about the “tailored plan” and was once again contacted by the regional managed care organization. We did the preliminary intake interview and were assured we would have a follow up on a regular basis. We then learned this had been postponed from October 2022 to April 2023 but there was little follow-up except through email. The organization wanted his med list, then wanted to know what each med was for (again disappointed that those in charge of directing care did not have the knowledge nor the ability to use a PDR (Physicians' Desk Reference) or even a Google search about the meds). We then, after the April notice of postponement, heard nothing, but received a letter stating that the regional behavioral-health facility had been trying to get in touch with us in July 2023 (we had had no phone call, email, or other communication ). I called the number provided and was told that they had changed computer systems and not all contact information was transferred (again disappointed that the onus was placed on us “we have been trying to contact you“ when indeed it was their issue.) I was also assured that our case worker would contact us within the next week to ten days. That was July 2023, it is now October 2023, and we have NO contact with the regional behavioral-health facility in any form, no phone call, no email. And interestingly, the State sent a notice that the “tailored plan “ was put on hold indefinitely, and the next week we got a letter from them saying “ welcome to the tailored plan”. It is enough to make you just shake your head.

 

I then went back to the DHHS website and found that you could address barriers through something called the Olmstead Barrier group. I sent an email with the abbreviation of my son's history. I got an email back and returned it with times and days when they could contact me with my home land line and with my cell phone number. There was no response after about 2 weeks I had a voice mail on my cell phone which I responded to via text again saying that the representative could call and leave a message on either phone and I would call back as soon as possible, explaining that we get at least 20 robo calls and I don’t often answer my phone directly because of this annoyance. I received a text acknowledging he had received it. Then, another disappointment, I have yet to have a conversation with this same representative. He did contact me via text, asking my daughter's name and seeming to indicate we had had a conversation about my daughter. I informed him by email and attached my original email indicating that it was my son, and we had not spoken in person, on the phone at any time. That was in late July or early August, to date (It is now October 2nd as I write this). There has been no reply to that email and no further communication in any form from the Olmstead group or the representative. So here is another barrier, that barrier group can put on their books - the inability to get in touch with the barrier group.

 

I recently read that Medicaid funds were perhaps going to be shifted to doctors and others to teach caregivers how to care for their loved ones — how about instead of this, have the caregivers reimbursed for their time and effort for keeping their loved ones stable, out of the hospital? After all we know our loved ones, we work with them daily.

 

I realize that mental health is a huge umbrella issue, so here are some helpful suggestions that would lessen disappointment and at least give a genuine picture of the woeful state of services for those with serious mental illness, rather than the false hope situation that clearly exists now.

 

 

If you have read this whole thing, I thank you. Yes, I have heard of the tiny home village in our county, yes, I know there are 15 homes, I think 5 are dedicated to veterans, and the rest are for those who can live independently, have some sort of job and are lucky enough to win the lottery in being chosen for a tiny home.