The first time our son went into residential care was more than seven years ago. He was young and he struggled with issues that impact too many who struggle with autism. Rage, anger, self harming. When we gathered outside of Lake Mary Center in Paola, Kansas it was to let him find some of the skills he needed so that he could come home. He had just finished a stay in Crittenton mental health hospital.
It would be the first of many. When I wrote this diary, all those years ago, I called this photo "what love looks like", and I worried then about how we treat those with disabilities. I have spent the entirety of my life fighting for issues that impact those who are disabled. Having a sibling who was physically disabled and a son who was mentally disabled, I know better than most what the fight for access and care looks like in America.
I first became aware of our son's issues with autism when as a young child he began hurting himself on purpose and in a serious way. He was slow to reach his milestones and his rage would veer out of control.
Before that photo above, he was taking medication to help address those issues.. and it helped, a great deal. He was joyous he found energy and it was a relationship I deeply wanted with my son. The medication, though didn't continue as he grew and adjustments were needed.
Rage problems returned. It began by an attack on a teacher. Than another. Medication, treatment and work with doctors and therapists became critical in maintaining not only his way of life but our sanity and safety.
The first time we had an emergency drug change, I worried. It was a last minute change to an increase in a drug he had just started - aripripazole. It was scary. But that run to go get an increased dosage took a short time our son became himself again. Self harming was removed. We didn't worry about him picking holes in his body to the point they were giant open sores. I didn't fear he'd intentionally bite a hole in his tongue or cut himself. Once again, he was OK.
A few years later and in an OCD rage he through a desk at a teacher; clearing a room and requiring two police officers to restrain him. Emergency psychiatric intake, medicine changes and more were ahead.
We fell into a pattern of about every two years we'd go through the dance. We transitioned to Risperdal. Mixed in Adderall. And Depakote. And several others. As he grew older, new problems emerged. With the help of the psychiatric staff at KU Med Center we monitored his health and his growth as well as how the drugs were working.
For several years, he has been in a year around school - and it came as an answer for our child we didn't know existed.
Many of us wait on long term residential or independent living facilities. Our children struggle with basic tasks, from potty training to rage and inability to take care of themselves. We love them. We want what is best for them, and every day we fight for them.
Last week I let a small group on DailyKos know that our son had once again returned to in patient hospital care, this time at KVC. Because of a shortage in beds in Kansas, we waited 8 hours and had to go to a hospital to get an emergency checkin. This came after an assault that injured two employees and a child who had told others that his need to self harm was at its most severe (he thought about killing himself and others).
I waited in that hospital for the right care. Today, with drug changes, he will come home. I've waited all week to see my son again, one of my best friends in the world. There is no connect you can have like that with a child.
An advocate for Gay Rights once told me: it was good that I was in the fight with them, but I could never really understand the pain you feel in the gut when you are under attack directly.
Last night, I felt it. I barely slept.
http://www.khi.org/...
“Preauthorization, that’s really the hang-up that I have,” Denning said, noting that he was uncomfortable with the prospects of someone with a mental illness being denied immediate access to medication they’d been prescribed or had come to depend on.
Denning said he’d heard that if the bill becomes law, KDHE might enact a three- or five-day “automatic refill” policy to ensure patients’ access to their medications while their physicians, pharmacists and managed care companies resolve prescription authorization issues
“I’m opposed,” Kelly said. “I think we need to give this more time. I was hoping we could put this off until there’d actually been an opportunity for (KDHE) to do more than what’s been accomplished so far.”
Sen. Elaine Bowers, a Republican from Concordia, also voted no. “I’d rather we fix (SB 123) in here than on the Senate floor,” she said, adding that the community mental health center in her district had urged her not to support the legislation.
“I respect my experts back home,” Bowers said.
The state’s mental health advocates oppose the bill, warning legislators that it would add administrative barriers to a treatment system that’s already challenging to navigate, send some high-risk patients into crises and shift a sizable portion of the system’s costs onto hospitals and jails.
How does this work out for children - children like my son?
http://ksn.com/...
DODGE CITY, Kansas– Rickey Schweitzer had been in the Ford County Jail since November 10th, but on New Year’s Day jail staff say they found him dead after an apparent suicide.
After allegedly attacking a Dillon’s employee at a Dodge City Dillons, Schweitzer was ordered by a judge to have a competency assessment, but for him and other inmates who need either competency or mental health evaluation, they have to wait for a bed to open up at one of two state hospitals. He was meant to go to Larned State Hospital, but there was no bed available to him.
The county level however, has seen zero dollars, and with cuts there are fewer hospital beds available as well.
We began the year in Dodge City, where a man couldn't receive mental health care - we were too full thanks to funding and other concerns.. and he committed suicide.
Could this be my son, down the road?
http://www.kansascity.com/...
When Osawatomie is approaching capacity, it no longer will accept patients who’ve agreed to voluntary commitment for treatment, and it will triage, based on their diagnosis, patients who are involuntarily committed because they pose a threat to themselves or others.
Community mental health centers, which provide initial care to people in crisis and refer patients to hospitals, will be responsible for finding alternative sources of care.
That will leave many mental health centers searching for resources that have grown increasingly scarce as more psychiatric hospital facilities have closed, said Kyle Kessler, executive director of the Association of Community Mental Health Centers of Kansas.
“It’s a significant concern. They’re going to do their best to provide treatment,” Kessler said. But patients “could be waiting for services in emergency rooms or jails. That’s the last thing we want.”
When he needs help will he be turned away at the door?
What will happen when he turns 21? Where do we go?
It is easy to love someone. Teachers loved my son enough that they encouraged him to take part in her wedding; including him in her community. His big smile and hearty laugh warmed the room.
What kind of future waits for children like him in Kansas?
http://www.khi.org/...
KDHE Acting Secretary Susan Mosier has assured legislators that the new prescription processes would improve beneficiaries’ health and likely save the state $8.3 million.
We'll save money. Alter drugs on a 'new regimine' which sits in between a doctor and their patient. We'll create lags and hoops. We'll promise to not alter current drugs until after the new guidelines have been created, but after that.. all is fair game.
I have a question for the legislators that put saving money and their own fears over medical advice: how much value is there in a life? Are you OK with a man committing suicide while waiting in jail because he couldn't get care? Patients turned away because there are no rooms available? Those who self harm or are a risk to others.
I want to know, for the religious: how much value is there in a soul? Advocates were given 90 seconds to speak against the policy a piece. Give me the 5 minutes you provided to proponents. Give me 10. Let me tell you the value I'd place on my child's life.. because your saving of $8M is nothing in comparison to how I'd feel if he is that man in jail. Or if he harms someone.
The saying I've uttered for many in causes is this one:
When the Nazis came for the communists,
I remained silent;
I was not a communist.
When they locked up the social democrats,
I remained silent;
I was not a social democrat.
When they came for the trade unionists,
I did not speak out;
I was not a trade unionist.
When they came for the Jews,
I remained silent;
I wasn't a Jew.
Whether you know someone with a disability, or if you love someone, or if you have cared for someone.. I'm asking you: Stand with us now. We cannot afford to be silent.