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 the NC 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 that the UNC Oasis team 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 the program at Caramore, 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 at Caramore and another one as a dishwasher. Then Covid 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 Vaya health and expressed my concern and was told at that time there were 134 beds in Chatham county ( our current residence) and was promptly brushed off with a list of all facilities in Chatham 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, eating disorders. I used the list provided by Vaya health, and some of the phone # 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. Vaya health did not follow up with us at that time even after we shared the information we had found.

SO I moved on to NCDHHS 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. Ms.Stokes 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 ii 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 Chatham 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, or Sharpe and Williams . 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,Sharpe and Williams have yet to acknowledge my submission over a year later, Easter Seals had only openings in Virginia, and Monarch Health out of Charlotte 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 Vaya health. We did the preliminary intact interview and were assured we would have 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. Vaya health 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 or even a google search about the meds). We then after the April notice of postponement heard nothing, but received a letter stating that Vaya 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 place 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 Vaya health 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 Vaya health sayin “ 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 so thing called the Olmstead Barrier group. I sent an email with the abbreviation of my sons 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 he (Ben Owen) 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 Mr. Owen, he did contact me via text asking my daughters name and seeming to indicate we had had a conversation about this 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 2 nd as I write this) there has been no reply to that email and no further communication in any form from the Olmstead group or Mr. Owen. So here is another barrier , that barrier group can put on their books – inability to get in touch with the barrier group.

I recently read that Medicaid funds were perhaps going to be shifted to doctors and other 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 clearly exists now.

• In every “list” please make it known which one will accept those with schizoaffective disorder.
• Also make it known which if any beds are available
• Have contact information, forms and admission applications made State wide rather than agency by agency and require that the agencies have a valid contact number and email address and a time line for response
  Listen to those people who live , work and take care of those with severe mental illness

If you have read this whole thing, I thank you . Yes I have heard of the tiny home village at Penny Lane in Chatham , 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.