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
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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???

An invasion of Prattage

Well the beat goes on.

Now that the new regime has started we needed to make a change in how Sean gets picked up by Doc and so we decided that it would be less expensive if we covered Doc's gas costs out to Byers to pick up Sean rather than try and have Nancy take Sean in to Aurora. Just one small thing – but it's just the rattle of the small stones before the avalanche begins.

We obtained a copy of the evaluation that was done for this – it was done last year at Denver Options in an interview with Nancy. It is probably superfluous to say that nancy had no idea what was going on and Denver Options did not explain it. We have to go to many meetings in a year at which many questions are asked and which we give answers to.

Why didn't the person doing the test give any background? Why was nothing mailed out to us? Why are we being kept in the dark?

I read this questionnaire briefly yesterday evening and one thing that struck me, right off the bat was the careful delineation regarding “time”. Such and such a thing has to be done : Monthly? Weekly? Daily? Hourly?

How about – something has to be done every day for a week but then doesn't need to be done for three months? How about sometimes it's every hour during the night, some nights we get to sleep for a whole 5 hours? Nothing in there for that of course.

Sean's seizures were noted as being a “1” - as in controlled and not a problem. What this ridiculous scale doesn't even begin to consider is HOW THAT IS BEING ACHIEVED!!

It is being achieved by diet, exercise and monitored fitness along with the medication. And yet this “plan” is proposing to hack down one of the pillars of how this is being achieved. Fitness and weight management.

I know that it probably seems that I am being over the top on this. But I ask you to consider this – at one point, about 6 years ago Sean was in crisis, he was suffering seizure storms – seizures that would go on and on, one after another, leaving him exhausted and us frantic. We have come a long long way since that time. Seizures like these are life threatening.

So now, thanks to some smart work by Rose Hospital doctors and some hard work by Doc and (dare I say it – us) we have a healthy and fit young man.

And all SIS can say is “well he does not need any support”???????????

Thank god these Prats were not around for the last 5 years.

In the quiet of this wonderful morning

Sean and I and two large dogs will be out on the road in a few minutes. Enjoying the cool air of a summer morning on the Colorado plains. We will walk a couple of miles, Sean will pluck some sort of plant to twirl in front of his eyes, the dogs will be their usual unruly selves and cross leashes, sniff everything and try to mark several square miles as "theirs".

We will enjoy that most unusual Colorado landscape - green vegetation!! We have had so much consistent rain over the past weeks it has been truly amazing.

And we will let Mom get some much needed sleep.