My name is Krystina McKay. On behalf of my son, Blake McKay, I request your assistance in helping him receive the psychiatric care he both needs and deserves. This care is being denied to him solely because of his disabilities which currently have resulted in his wearing a cast and being confined to a wheelchair. I request your assistance in obtaining in-patient psychiatric care, for a 14-year old child in a wheelchair (short term) and changing the laws that allow this discrimination (long term). I firmly believe your immediate intervention may help save Blake’s life and your persistent advocacy for this issue may save the lives of many other children with disabilities. At the very least, if you are unable to personally help, I ask that you provide additional information which I can use to successfully obtain the appropriate psychiatric care for Blake as soon as possible. This issue effects many more families than just our own. My son, and evidently a lot of children in our state, are in dire need of help and resources that have been denied by their healthcare providers due to their physical disabilities or handicaps. To illustrate the effects the denial of this care is having, and to inspire you to step in to make a change, I would like to share Blake’s story. Blake is the middle of my three boys, and has had quite a life. When he was three months old we found out that, up to two weeks before he was born, he developed bilateral bleeds in his brain. The doctors, at that time, told us he would never be able to walk or talk. They suspected he would be completely blind and we likely couldn’t expect him to even crawl. It was a very doom and gloom prognosis. But Blake is a fighter and we didn’t accept the doom and gloom. He is delayed, certainly, and has quite a bit of medical complexities. Blake is turning 15 next month. When he’s not recovering from orthopedic surgery and in a wheelchair, as he is now, he not only walks, he runs. He has a vast vocabulary, and was using words like “exacerbating” ACCURATELY at three years old. This boy is the definition of miracle. He came out of his childhood with some problems certainly. It’s always a journey and we’re always addressing things, but truly his quality of life thus far has been leaps and bounds beyond what any medical professional ever expected for him in his infancy. Along with his cerebral palsy, epilepsy, fragile x syndrome etc. he’s struggled psychiatrically since he was about 7 years old. He understandably suffers from anxiety. However, the alarming thing for us was, at 7 years old Blake started having auditory and visual hallucinations. He was hearing voices and they were telling him to hurt himself and others. Of course we got him help right away. We worked closely with a psychiatrist and a counselor etc. to ensure he had the help he needed. It was well managed on an outpatient basis until 2018. In 2018 he had his first psychiatric admission to a facility for suicide attempts, which he made due to his hallucinations. He did well after that admission until last April. Last April the voices were back. While he was at school he climbed onto a table and was going to jump off the balcony over looking the cafeteria. He did not actually jump at that time, and we got him some inpatient services. He was doing well thereafter, from a psych perspective and we started addressing some of his physical issues again. He needed some orthopedic surgery done on his feet and his left leg. Thinking summer would be a great time to get as much of that done as possible, so he missed as little school as possible, we scheduled his first surgery for July. This surgery requires Blake to wear a cast, and necessitates the use of a wheelchair. Then, in August, he started hearing voices again. Despite having had an absolutely miserable experience during his hospitalization in April, he asked for help and said he was worried because the voices were telling him to hurt himself and he didn’t want to. He was worried he wouldn’t be able to fight them off for long. Canyon Creek Behavioral Health, in Temple, Texas is where he went in April, so I called them right away. They were happy to take his info, said they had a bed for him, and could help, no problem. As we were getting off the phone, I mentioned that he is in a wheelchair as he is recovering from surgery and is non-weight bearing on his left leg. With his Cerebral Palsy his coordination isn’t the best and crutches aren’t a realistic option for him. They said they cannot accommodate his wheelchair or casted leg and advised me to take him to Scott and White Childrens ER and that they could find someone who could help. When we arrived at Scott and White we consulted with a social worker who absolutely agreed inpatient care was the only option that made sense at this time. She reached out to Canyon Creek directly to confirm what they told me. The staff at Canyon Creek clarified, it is not that they can’t accommodate the wheelchair; it is that they have a policy which requires them to view both the wheelchair and the cast as potential weapons. They said they can’t accept anyone in them. As someone who has worked in psychiatric facilities in other states, this makes no sense to me. I can tell you, there were many patients with casts and confined to wheelchairs. If those other facilities excluded wheelchairs or casts from their populations, there would be A LOT of hurt and untreated people in the world. The idea that this restriction applies to CHILDREN is even more alarming to me. If children are in need of these services, they will certainly continue to need the services as an adult. It seems to me the policies, here in Texas, are perpetuating an issue by denying services to an entire population of disabled people. The social worker went on to call every facility from Dallas to Austin to try to find a place that would admit Blake with his wheelchair and cast. No facility would. They all acknowledged the psychiatric need, but wouldn’t make an exception for the wheelchair. We eventually met with a tele-psych doctor who basically said their hands are tied. He suggested the increase of one of Blake’s current meds to see if it helps, combined with aggressive outpatient psychiatric treatment until Blake’s cast is off and he is on his feet. That’s how we have proceeded. We were doing daily check-ins, and the voices were at bay, until last week. Blake started school last Wednesday, and everything was fine. Thursday was another good day. I talked to him twice, and he was in good spirits. No voices. All was well, until I got a phone call around 2:00. The school advised me that there had been an accident. Blake and his wheelchair went down a flight of stairs. At that time, Blake was telling the school it was an accident, and that he flew around the corner too fast and fell. When they reviewed camera footage they found that was not true. They told me to come to the school. When I arrived there were two police cars, a fire truck, and an ambulance. It was quite the scene. When I went in the police wanted to talk to me but I refused until I saw Blake and saw the video they had mentioned. I saw Blake and confirmed he was okay and talking to people. I then went with the principal and watched the video. The video depicts Blake slowly approaching a stairwell and pulling forward towards the stairs, where he sits. He then backs up, as if he changes his mind, then pulls forward again. He did this a number of times. Then Blake turned his head appeared to be speaking to someone in the stairwell, but no one was there. Then, after a few more struggles/debates etc., the video shows Blake lunging himself and his wheelchair off the top of the stairs. In the video, it is obvious he was struggling, he was alone, and he very deliberately, in that moment, did something that could have cost him his life. It is important to note, one of the conditions Blake has, is a large cyst in the back of his brain, in his posterior fossa specifically. Any head injury is extremely dangerous for Blake. The video footage would have been traumatizing for any other family, but with Blake’s medical condition, this was especially terrifying for us. After viewing the video footage, I talked to the police. They said since it was an obvious attempt at suicide or self-harm, they had to take him to the hospital. They said medically he was fine, they believed, but psychiatrically he needed to go. I told them, I was happy to have him screened medically but that the doctors wouldn’t help us psychiatrically because we had just attempted to have him admitted. I explained what happened a couple weeks prior. The police officers called someone to verify what I said. They then said they could take Blake on an emergency order of detention and the hospital wouldn’t have a choice; they would have to hold him for at least 36 hours. That would have bought us some time to figure out an option to keep him safe, and get him help. I agreed to that because the idea of finding help for him, especially since I had no idea what happened, was great. I had talked to Blake maybe an hour prior to the fall and he was fine. He had been excited to come home and talk to me about a Disney trip with choir. His throwing himself down the stairs, shortly thereafter, made no sense. When we arrived at the hospital I was able to talk to Blake and found out he wasn’t intentionally lying. He didn’t remember anything after seeing the stairwell, until he was on the ground. So he had filled in gaps in his memory with what made sense to him. He was extremely confused and concerned that since he didn’t remember what happened, he couldn’t anticipate or prevent it again. He wanted help. I was hopeful since the situation had escalated and a serious attempt had been made, with no precursor to indicate a problem, the medical professionals would be able to provide the much needed treatment. Who would be considered more in need of inpatient services? Evidently, not Blake. The same social worker came in and told me she didn’t really know how she could help; all of the answers would still be the same. Until Blake’s cast and wheelchair are gone, Blake will be denied the inpatient psychiatric treatment he wants and so desperately needs. The social worker also explained that she has this same issue with type 1 diabetic children. If they have an insulin pump, she generally can’t place them in psychiatric care facilities. For some reason in the state of Texas, it appears that children specifically can have physical handicaps, and psychiatric handicaps, but NEVER both at the same time. How could this be? This definitely seems to be a violation of the American Disabilities Act. Psychiatric hospitals in Texas are denying access to entire populations of children, based on their physical disabilities. I have no idea how wide this net spreads. However, I can say if children need inpatient psychiatric services in Texas, they absolutely can not be in a wheelchair (and I presume that would also extend to walkers and crutches), have a cast of any sort, or have a need for an insulin pump, pain pump, or other medication administration pump. Given the wide range of reasons a child may need any of these things in an acute or chronic fashion, it seems like an incredibly large population of children are being denied fair access to required medical treatment. When we got to the hospital the same police officer that had just assured me Blake would be on a hold in the hospital for 36 hours, told me that they were releasing him into the hospitals care and if the hospital lifted the hold that was within their rights. Thus, the police officer told me the hospital could do exactly what I feared they would, send Blake back home. Not only did the hospital not do anything to assist us with placing Blake in a psychiatric unit, they failed to do any scans to ensure Blake hadn’t further injured his leg or sustained a brain injury. I have contacted his orthopedic surgeon to follow up on our own, in that regard. From my perspective, the only thing that came out of the trip to the hospital last Thursday, was someone sat in a room and observed Blake for four hours, then the doctors told us he seemed fine and was very lucky. The unspoken message we received was Blake just wasn’t worthy of help. I told everyone we encountered at the hospital that I was uncomfortable with the treatment plan, and that Blake and I were both afraid for him, and his safety. Since he didn’t remember the event, there was no way for Blake to recognize when something was happening and to prevent another life-threatening incident. The ER doctor came in and said “Once he’s out of the wheelchair, we’ll be happy to help him” to which my reply was rather snarky and sarcastic. I said “Yeah, if he survives until then!” The emergency room doctor looked me dead in my eyes and said “Yeah, unfortunately.” I absolutely recognize that the doctor, the social worker, the nurses, the police officers etc. are all stuck working in a broken system. A system that has allowed for this very blatant discrimination for evidently a very long time. A system that denied help to a boy, with a psychiatric history, based on his physical needs and limitations. A system that, because of a physical limitation, further denied help to a boy brought in by law enforcement and EMS for a serious suicide attempt. However, it is that exact limitation that made this incident measurably more dangerous. It increases the need for help, yet, it’s the very reason help has been denied. This has made me sick for my own child for weeks now, and I’ve had many sleepless nights since his incident with the stairs. I understand there is probably very little you can do to get Blake the help he needs in this moment. However, to be honest, his needs will likely continue beyond this immediate need. Blake will undoubtedly require further orthopedic surgery and the subsequent use of a wheelchair. If his psychiatric needs arise again at the same time he is undergoing orthopedic care, this situation will reoccur. I see a long term need for change, not only for my child, but ANY child with a physical limitation and a psychiatric need. Statistically, the odds of a child having a need for psychiatric services increases with physical handicaps but somehow access is restricted for that population of children. It doesn’t make sense. It seems grossly discriminatory, and unjust. It seems as if it is setting these kids up for a more detrimental need for services as adults, assuming they survive their ailments. Because for children like my child, it isn’t as simple as treating a depression, or an outward emotion. There aren’t warning signs. He has a delusion he believes to be true, or he hears a voice in his head telling him to do something, and now, he’s unable to fight or control it. He’s a happy boy, a bright boy, with dreams for the future and who has fought so hard his ENTIRE life to be where he is. He’s asking for help. Begging for it actually, and he’s being denied because of a physical need. I even asked if he could be admitted to the children's hospital until his cast could be removed so we knew he was safe and then we could get him into a facility as quickly as possible. That request was also denied. We were simply pushed out the door. I think we made them uncomfortable. They knew they couldn’t help, so they wanted us out. I asked for advice and guidance on how to keep him safe, if he should go to school etc. and no one could really help. I feel like there should be some sort of legislation protecting these children. Facilities that are Medicaid participating etc. should have to abide by the ADA and allow fair access for these kids to get services. The fact that ALL of these facilities can deny him for the reason of his wheelchair and cast is absolutely nauseating. The fact that children with insulin pumps aren’t allowed access and are openly denied services because of their medication pump is nauseating. Someone needs to protect these kids and some of the facilities should be stepping up to provide access to these kids. It doesn’t have to be ALL facilities. I’d happily travel, if someone would be willing to help him. But apparently this is a universally accepted practice here. There is no distance I’ve been able to find, that we can go to get services. Is there anything you can do? Any guidance you can provide? Any awareness you can help give? Anything at all? I’m grasping at straws and intend to reach out to anyone and everyone I can think of to try and help my son and the rest of our communities’ underserved, medically complex children. If you can offer any assistance at all, or can entertain a meeting to further discuss this issue please do not hesitate to reach out to me. I can be contacted at (616) 389-5024, and my email address is krysti.mckay@gmail.com.