Well it's about time!

It's been ages since I posted and I will try to keep this updated!

Sean, our deafblind son, turned 30 last November. He still swims several times a week with his care giver, and generally, Sean's a very happy fellow. Earlier this year, we were concerned as Sean's blood test showed some liver problems but his latest tests are all OK, thankfully.

We have gone through some ups and downs in regards to funding for him, and we are now waiting to hear the final word from the state government about whether it was right for Sean's funding to be cut last July. It's been rough because after Sean had 10 years of stable support, with schedules that he was used to, the cuts changed his schedule dramatically. We were afraid that he could revert to some dangerous behaviors that he had when he was introverted. The appeal process is slow, mainly because there really wasn't an appeal process. We took it to the Medicaid court because it was the only place we figured we could appeal the cuts. Thanks to friends and family, we have been able to help support Sean's schedule and keep things on as even a keel as possible while the appeal is going forward. So THANK YOU TO ALL OUR FAMILY AND FRIENDS WHO HAVE HELPED SO MUCH OVER THIS TOUGH TIME!!!!

In a perfect world, private charities would come to the call. The Medicaid system is supposed to support him. If he weren't living with us, I cannot bear to think what would happen to him. A state institution is out of the question. The thought of Sean being in some place with staff changing all the time, abuse going on, and no one who understands him and cares about him - well I can't even think about that! Sean, being deafblind and mute from birth, is not what I would call someone abusing the system. It irks me no end that Medicaid is broke due in no small part to rampant fraud and abuse in the system.

So Sean lives with us, Mick works his tail off to provide for us, and we are very grateful to be able to live out in the country with our animals. The latest animal to join the Wenlock ranks, by the way, is "Rooster Cogburn", the rescued barn kitty with true grit! He lost his eye to the same predator (raccoon we think) that killed all his siblings over in a friend's hay pile.. This little black and white, long-haired kitten had other plans than to become raccoon ragout. Now he is 9 weeks old, has made friends with our cats and dogs, and is busily chewing our toes and hands off with his new, needle-like teeth. He's happy to be here!

Rooster plays with Sean's hands and feet too, and Sean, in his inimitable style, is very careful to push Rooster away, but gently. Rooster of course comes right back most of the time and Sean just keeps pushing him away without any emotion or upset about his toes being chewed on. They have come to some sort of quiet understanding: Rooster plays with Sean's toes when he wants and Sean lets him do it for oh, 5 or 10 seconds before he pushes Rooster away. So far I have failed to get decent video of this interaction. But I did get a shot this afternoon of them when Sean decided to lie down for a while.

Rest In Peace Bailey of Tir Na nOg

This photo was taken in July. Bailey was out, as usual, and Sean was sitting on his tramp pulling grasses and enjoying the sunshine. Bailey was enjoying getting treats from Sean too.

Tuesday, November 24th, 2009, our beloved Bailey was humanely put down by our vet. We guessed that he was around 34 years old. We had had him since Dec 1999. Bailey was our first horse and although Sean only rode him a couple of times, Bailey brought happiness to us in many ways. He taught me how to care for a horse. He taught me how smart horses are. He was the horse you could put anyone on, especially kids. He beamed with any attention given him, and he got lots of attention with us - physically with his care, mentally with the tricks I taught him, and emotionally with being engaged and interacted with on a daily basis for all of those 10 years. Sean was safe around him, and Bailey loved getting treats from Sean.

But recently, Bailey had made it clear that he was plum tuckered out. Our cold weather was incredibly hard on him. He could hardly walk, his coat was thin, and he had stopped enjoying his huge morning tub of senior feed and beet pulp. He had begun leaving almost all of his hay. His daily naps had become longer and longer. While he did go out into the pasture every day, the trip out and back took him a long time. It was my honor to listen to him and help him when he needed it, to find a painless peace. And so, sadly, we have had to say goodbye to our Bailey. He is buried on our property.

I remember the day Bailey arrived at the boarding barn in Jan of 2000. I hadn't been able to sleep for 3 weeks since I found him! I was SO excited! I had wanted a horse since I was 6 when my family moved away from our place in Michigan where we had our own horse. So Bailey was home! I was beside myself! My friend Vicki, who trailered him for me, looked him over once he was in his corral. She noticed his jaw was locked. She made a phone call and within 2 days an equine dentist came out, floated his teeth, and found a huge long tooth very far back in his head which had grown so far down that Bailey could not close his mouth without cutting his jaw. Horses need to chew their food by grinding their jaws together. And because horses' teeth keep growing their whole life, those teeth need to be filed down, or "floated" on a regular basis. The dentist said there was no evidence that Bailey's teeth had ever been floated! This tooth had caused his jaw to be cut and consequently, he couldn't close his mouth to chew. It took about 2 weeks for his jaw to heal. The amount of food he ate was cut down nearly in half and he still gained weight and began to utilize all the nutrition he was eating. He had been slowly starving to death because of those teeth. And he was at least 20 years old. When I had the vet come out 2 weeks later, he pronounced his opinion that Bailey was probably more like 24 years old.

I'll write some Bailey stories because he sure has been inspirational all these years. We miss you, Bailey!
Nancy

A Frosty Morning

We had our first autumn snowfall. I got breakfast going early: sausage, bacon (a luxury we don't have often) and eggs. Sean managed to down his usual 4 fried eggs plus half of the sausage. Sean wanted even more after finishing all that! He doesn't care for bacon so Mick and I got to enjoy that with our eggs.

I had to break the ice on the horses' water troughs when I went out. It was COLD! The spider web on the corner of the fence was so beautiful I had to take a photo of it.

After hay was distributed to the hungry horses, the dogs needed to be taken out for their walk. Some day we'll have a fence around the yard so we can let Snowby out to run, but until then we'll have to take him out on a leash. He just loves racing fast vehicles too much for his own good.

Sean and Mick went for a walk in the cold this morning. Sean came back with rosy cheeks and is now enjoying the warmth of the fire in the fireplace.
Nancy

Here's a picture of Sean with Ellen Jaskol, the photographer who took the photos that appeared in the Westword article which came out today, Aug. 19, 2009. EllenJaskol.com Here's the link to the Westword article:

Westword Article
.

If that link doesn't work, just go to www.westword.com/news

The article, crafted by Melanie Asmar, examines the funding cuts to the Developmentally Disabled here in Colorado. The story follows Sean through a typical weekday with his lunch, swimming and walking with his care-giver, Doc Davis, and shows Sean at home. It also shows the bureaucrats' hollow answers that predictably pass the buck at every turn. Passing the buck is so much easier than coming up with any possible solution to the way Colorado is implementing draconian changes without adequate advance notice to families, care-givers and even the agencies involved with providing local services to the developmentally disabled.

Great job on this article, Melanie. And excellent photos, Ellen! Thank you for helping to get this terrible and scandalous situation OUT THERE so that people know what this corrupt government is doing. You have joined the ranks of those who speak for Sean because he cannot.

and you can check out a website dedicated to giving Sean a voice Seans Voice

Nancy, Warrior Mom

ironic google ad on the blog

As I was reviewing the last post I made - the one with the video of His Highness, I saw an ad - it urged me to sign up for e-mail updates from Governor Bill Ritter!!

Ironic considering I have been requesting the Gov actually answer our questions about the State of Colorado and the hack job they have done on support for the developmentally Disabled.

Hey Ritter - if you have time to do updates in order to try and be re-elected then you have time to actually answer emails about the job you are supposed to be doing right now.

Shopping for brekkies

We were in King Soopers this morning - Sean and I, getting the stuff for brekkies.

Update of the Colorado Created Funding Fiasco

The Colorado state templet is the same: we write letters, our friends write letters - to those in the state Division (or Dept) of Health Care Policy and Finance, to those in the Division of Human Services. To the Governor. To our Congressmen. Let's see - who answered? Well, we got a letter back from Dr. Sharon Jacksi, head of the state Division of Developmental Disabilities. The letter not only DID NOT answer our concerns, but Dr. Jacksi said that her biggest challenge was to explain how complex their administrative procedures are to us, the idiot parents. Well, she didn't exactly say that, but she came very very close.

Her letter and Mick's reply to her can be found on our Friends of Sean Facebook group where many of the letters written, plus any replies are displayed in PDF format. No answer back on his latest one yet!

After the first letter back from Dr. Jacksi, I got a phone call from a Ms. Jo Kammerzell. She has something to do with the SLS waivers. She actually had some experience with the deafblind, which was refreshing to hear. There are precious few people in this state with that experience. She told me that she would check into the possibility of other programs for Sean, and/or other waivers. She mentioned the possibility of rehab being prescribed by a doctor for Sean in order to continue his swimming.

These off-the-cuff suggestions sound plausible for about 5 minutes. But not a single "suggestion" holds any water for our son. Her experience with a deafblind man is valid of course. But her suggestions were totally useless. It has taken 10 years to put into place the current set of supports for Sean. It has taken meetings and plenty of work by a team of people to get Sean the care that works for HIM. Did she actually think we were twiddling our thumbs in all those meetings over the years to figure out the best possible supports for Sean?

Here's an example: According to Ms. Kammerzell's suggestion, a doctor would prescribe physical rehab for Sean so that he could continue to swim. That would mean he would need to meet a physical therapist and be put through some sort of structured physical therapy program. HELLO!!! Sean swims because he loves to swim. He does not need physical therapy with some therapist who can't communicate to him. He has no use for that and you can bet he would never stand for it either. He will get into the deep end of a pool and he will swim around in it for a few hours. THAT is his way.

These suggestions are just pathetic. They prove that these people don't care a WHIT for what is actually going on. They are trying to stave me off, to keep me at arms' length and I will NOT be kept at arms' length. They have thrown our lives into chaos and they need to be responsible for that. There are real, live people that their actions are destroying.

This is the pattern that administrative people share. I am sure they THINK they are "helping". They come to meetings or they telephone and give well-meaning suggestions that have absolutely NOTHING to do with solving the problem. We saw it years ago with Denver Public Schools. We are seeing exactly the same thing now.

The problem is NOT going to be solved with a phone call and with a few uninformed suggestions to us. We have dealt with Sean for 29 years. Who do these administrative people think they are dealing with? Complete MORONS? Well, they are NOT helping. They are suggesting things without a clue about what we deal with every day, without a clue about who Sean is, the circumstances that surround him,

The problem is that the state of Colorado (both those Departments mentioned at the top of this entry) have screwed up the existing supports for a lot of people. Instead of actually consulting with those directly involved, the state has seen to it that with just a few week's notice, our care givers have been hung out to dry and our family members' supports have been chopped by 54%. I'm being redundant but bear with me.

Additionally, the state now FORBIDS the agencies providing direct services to enhance the rate of pay to their care givers. That means that the agencies can no longer pay more to care givers for those clients with very extreme needs. No, the state's new set rates of pay for very good care givers is now so low that only the worst qualified people will apply. WELCOME TO ABUSE IN THE DD SYSTEM! Welcome to future DISASTERS as a result of these changes!

Is the state ready to bear the brunt of all the CONSEQUENCES OF THESE ACTIONS? I don't think anyone is looking there!!

Today I got another phone call from an Amy someone or other in the Health Care Policy and Finance Dept. I'm sure she was sorry she called. She got an earful for 40 minutes about the fact that had the state BOTHERED to inform the people actually involved, that we as parents might have been able to come up with some solutions! We could have been proactive in working with our CCBs to figure out ways of doing things.

But no, these people including Sharon, Jo, and Amy are all so fond of saying that these changes have been PHASED IN. That is absolutely so far from the truth it isn't funny. There has been NO PHASE IN. Phasing in is something that happens over a period of time and in increments. Finding out in May that our lifeline to our caregivers is being slashed July 1st is NOT a PHASE-IN. And it is NOT a "phase in" when our son's supports are cut by 54% for the next fiscal year beginning November 1st. There was NO "PHASE IN" whatsoever. These people just LIE and they keep LYING. I'm sick of it.

When Amy tried to tell me that the CCBs HAD BEEN informed over the last year or so that these changes were coming, I corrected her: NO, the CCBS were trying to tell the state at every possible meeting, that what the state had in mind would result in huge problems for people! But NO, the state was running its agenda and did NOT want to solve the details - like PEOPLE.

As I told Amy, their actions HAVE CONSEQUENCES. There is not one person in the state in these departments who has stood up and said NO,THIS IS WRONG. PEOPLE COME BEFORE PROCEDURES. Not one person has done ONE DAMN THING to change the way this is being done. Is there not one person in the state government that has an ounce of integrity? Are they just little sheeplets following orders?? Well we know where they leads, and that's exactly what these people are doing to our son and plenty of others.

These changes MUST BE STAYED. They must be put on HOLD until the families have been consulted, until people can try and get some solutions in place. It is the state's job to PROVIDE quality care for this population that cannot take care of itself. But this state is DESTROYING current and FUTURE quality care by these scandalous actions.

Oh, and the Governor could reverse all this in a heartbeat. He could order it all put on HOLD. But that would take some spine and integrity on his part. Frankly he doesn't have time for spine or integrity! He is too busy and excited about being re-elected. Well there are many, many families who CANNOT support him and WILL NOT support his re-election campaign, and who can be very LOUD, and NOISY at his Campaign HQ and bring cameras and media there.

HOW MUCH WOULD IT COST THE STATE OF COLORADO TO TAKE CARE OF SEAN WENLOCK 24/7? I dare say it would be a 5 or 6 times what it has been his funding yearly for the last 8 years. And now the state has cut it by 54%! Does that mean I get to go on the state payroll to take care of him?!

Oh - one last REALLY IMPORTANT point: Right now, there are funds, something like 3 MILLION DOLLARS which could be matched by Medicaid and put toward services TOMORROW. But the state of Colorado is STOPPING this from happening.

WHY? Here's my take: THE STATE OF COLORADO IS TRYING TO COVER UP ITS OWN FINANCIAL MISAPPROPRIATIONS BY USING THE FUNDS THAT SHOULD BE GOING TO THE DISABLED OF THIS STATE. I would love to audit the books of this state. I bet I could find a few million dollars that have been misappropriated. Why else would this be going on???

Corporate greed? Nothing compared to the government of Colorado!!

Rape and Pillage by the State of Colorado

For years we have been hearing buzz words and phrases like "interaction with the community", "independence", etc. We have been led to believe that the great Powers That Be (in regards to care for the developmentally disabled), are striving to help our disabled family members become more independent and have more interaction with the community. We have been led to believe that they are doing this with every cent of taxpayer money they can squeeze out of the budget. We have heard over and over how independence is one of the main goals of care.

Well, the State of Colorado, led by Gov. Bill Ritter (I am going to dub him "ridder") is not only stopping the actual quality care that took YEARS to get into place, but the state of Colorado is making it IMPOSSIBLE for the developmentally disabled (DD) in this state to keep what little independence they have been able to achieve!!

Just last night at the meeting at Denver Options we heard the heartbreaking story of a parent talking about their son who has been able to live on his own now for years due to the excellent supports put in place with the help of Denver Options. The new caps on funding which the State of Colorado is inflicting on us, will now NOT allow their son to live independently any more. With only a few weeks' notice, these funding changes have begun as of JULY FIRST. No appeal.

Our son, Sean will NOT be able to go swimming 5 days a week because of the caps on funding. Think that's no big deal? If Sean doesn't swim, he doesn't sleep. He is a fit, 29-year-old guy. He needs a lot of exercise to work off his natural energy. He can't see to jog, and my knees wouldn't allow me to jog alongside him even if he wanted to.

Sean can destroy a living room in about 50 seconds when he really gets frustrated. The years it has taken to get adequate supports in place for him are obviously not interesting to the State of Colorado. Nor is it interesting to Colorado that our son could face life-threatening consequences of being frustrated, like head-banging and hitting his head over and over. Perhaps it's time to take Sean to the Governor's office or the Governor's Mansion and see how long he can take care of Sean without Sean tearing his office apart.

The State of Colorado is trying to blanket these draconian measures with a soothing song of "equality". Instead of continuingdoing what has been working for a darn lot of people in this state, the State of Colorado is totally dismantling the supports! Denver Options has repeatedly told the concerned officials at state level that they are throwing real people overboard. But the State of Colorado is NOT INTERESTED. It is NOT LISTENING. NO to independent living! NO to whatever interaction people have been able to do in the community because it is something that THAT PARTICULAR PERSON needed.

NOW people have to be warehoused together in groups to go out and do something. NOW, the care givers can't get paid anything useful unless they can put 5 or 6 people together in a group to do an activity. Well, people are DIFFERENT. They have DIFFERENT ABILITIES. They have DIFFERENT interests!!! Why should they be thrown together arbitrarily to take part in their daily lives, JUST BECAUSE THE STATE SAYS IT'S FOR "EQUALITY"?

I'd like to see the Governor and the legislature having to go out and do everything every day with a small group of people THEY DO NOT CHOOSE TO BE WITH. See how long they like that. See how long until they get frustrated because they can't go out and do what THEY would like to do.

BEWARE SOMEONE TELLING YOU THAT WHAT THEY ARE DOING IS FOR "EQUALITY". OBSERVE THEIR ACTIONS, AND BE DEAF TO THEIR WORDS. Because what's clear to me is that someone, somewhere is getting something BIG for all this. Someone is getting rich off the back of the developmentally disabled in this State of Colorado. I'm convinced there is GRAFT, there is MALFEASANCE and there is CORRUPTION linked to all this.

And we will FIND IT and EXPOSE IT.

50 (FIFTY) care givers have already QUIT because they cannot make a living wage from the scraps that the state of Colorado sees fit to throw them for all their care and hard work with the DD public. WHAT STATE GOVERNMENT COULD POSSIBLY IMPLEMENT SOMETHING THAT CAUSES CARE GIVERS TO QUIT?? The State of Colorado. The State of Corruption.

This is NOT going to go away. The State of Colorado has messed with the wrong people. We, who deal with the disabled every day of our lives, are WARRIORS on their behalf. I am a Warrior Mom and proud of it. We will get to the bottom of this and we will make it all WIDELY KNOWN.

OUTRAGED? Yes I am. I try my best every waking moment to be a good, and positive person. But this makes it extremely difficult to be so.

Sorry to be out of sorts. It's really not like me!

How the State of Colorado is trying to hurt our son

Last night we went to a meeting at Denver Options.

Denver Options are the local agency that has been responsible for managing Sean's care for the last 15 years or so. The case workers who have been on the Sean watch have, uniformly, been wonderful people – last night we got to catch up with a few of them like Ann McNally who was watching out for Sean when he was “but a lad” through Julie Todd and up to the present “guy” Chris Barker. It was a bittersweet occasion.

Denver Options and its President, Dr Block were giving a presentation to clients, families and care givers about the changes that are currently being inflicted upon us all by the State of Colorado. Important to note – these changes are not being driven (ostensibly) by budget woes.

There were many things that were gone over and I will be writing about them in this blog as I get time. But there is a little vignette I wanted to share.

Both Nancy and I wished to be at the meeting – of necessity this meant that Sean would have to be there with us.

But Sean had other ideas! (LOL) he was not about to sit in some meeting.

Normally this would have meant that either I or Nancy would have had to have taken Sean home. Fortunately Doc was there and, as he had already seen the presentation etc he offered to take Sean out for walking and exercise.

So Nancy and I were able to attend.

Small thing – but only possible because of Sean's plan.

The plan that the State of Colorado is trying to ruin.

Oh one little thing from the meeting – in two weeks or so Denver Options has lost 50 caregivers who cannot do the job at the mandatory reimbursement rate that the new “regime” has mandated. How much are the apparatchiks of the state willing to offer contractors to work with our children?

$11 an hour !! That is self employment pay – not employee pay. Out of that $11 must come all the costs of self employment and insurance and so on. That makes the REAL reimbursement rate less than minimum wage!!!

LESS THAN SERVING BURGERS!!!

That's how much the State of Colorado values services for our son.

Do I sound annoyed???