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.

Pontius Pilate comes to Colorado

I am not sure if I linked this on the blog but if not, here it is, and if I did, here it is again.

http://oig.dc.gov/news/view2.asp?url=release07%2F081507adeyemi_pre.pdf&mode=release&archived=0&month=20076

This is but one example of many. I linked to a more general report that showed that abuse of children, developmentally disabled children, happened around the country. When I find that link I will post it.

The point I am making is that warehousing the developmentally disabled in "group homes" with poor budgets and untrained people and no supervision is sentencing them to abuse. Pure and simple. It is like watching an apple fall from a tree - it falls downwards, it does not fall up or side ways. It is a fundamental FACT.

If you put vulnerable people into situations of no support, no money, untrained people and untrained or no supervision then abuse WILL HAPPEN.

The State of Colorado is currently trying to gut the support given to Sean. It is trying to pile more and more upon Nancy and my shoulders. At some point our shoulders will give out, we are both human, we are both of us getting older there is a point where we cannot continue to just do more and more.

The State of Colorado - in the persons of Sharon Jacksi, Governor Bill Ritter and EVERY person on the chain up to the federal level are abandoning Sean. If, truly, we are in a resource shortage then surely the RIGHT thing to do is to support those families that are caring for their dependents at home?

because, if those dependents go into state care - they are being condemned to abuse. No doubt about it. The Government reports prove it.

And trying to weasel out of this is like Pilate washing his hands. While crying crocodile tears about "not enough resources" those same officials are setting in motion the inevitable abuse of the very population they are supposed to be protecting.

The officials are claiming that there are not the resources - so what is the best possible use of those resources? Helping parents like us take care of our dependents. Christ almighty I may be a flawed person but one thing I can guarantee - that as long as Nancy and I are alive, Sean is going to be safe.

But if this program goes ahead what possible chances do we stand? What chance does Sean stand?

Listening to the Sean Symphony

As I was watching Sean sitting on the floor this morning, holding his comforter and smiling I realize that there are few, very few people who have the heart and the patience to listen to the Sean Symphony.

Sean is a complex and very subtle mix of signals and "music" - the various factors that make up his perceptions and reactions to life. I realized that one has to listen to Sean like one is listening to a symphony, only then can you hear the harmonies and couterpoints that make up his life.

Our good friend Holly was staying with us and her dog, Heidi, would lay down on his comforter next to him. Heidi was a study in how to listen to Sean, Heidi just was there, sometimes she played, sometimes she sat and she and Sean were just there. Sean does not often tolerate dogs or cats that are around him - mainly I think because they are waiting for him to do something for them. But Heidi was facsinated with him, I think.

And there are some people who just seem to have this natural ear for Sean. Like those rare people who just "get" opera, some people just "get" how to listen to the symphony. Nancy Gunn is one of that list - she has always been someone who just listens to Sean. Holly is another along with, of course, Nancy. Both of these remarkable ladies just hear the music. I hope maybe I am another or maybe that's just wishful thinking. I think there is another person out there who has yet to meet Sean but I bet she will fit into the list - Paw-wet is her name.

One other person, someone who only met Sean a few times but who just loved him - my Mum.

Why this fight matters

I realized that with the maelstrom of writing and talking and posting and organizing that people newly arriving at this blog may not have the background on Sean's daily activities. If I may take some time here and paint a picture or two....

Sean's bedroom is at the south east'ish end of the house. His bedroom window does catch the light from the early sun very nicely. Sean's sleeping habits are extremely variable. Most nights he is up 2 or more times during the night. He will come to our bedroom and either make noise or start puling the comforter off so that nancy or I wake up. Sometimes he wants some Gatorade (Fruit punch flavor of course), sometimes he wants his bed tucked in and sometimes he just wants the feeling of company. As the dawn arrives Sean, if he is awake, tends to like to sit cross legged on the bed with his comforter wrapped around him and just enjoy the breeze through the window and the brightness of the day.

What I hope is obvious from the blog is what a happy person Sean is. He smiles a lot, he laughs a lot, he has an absolutely infectious giggle and he loves to play.

As you can imagine external stimuli are hard to come by for a deaf-blind person. Even though Sean can distinguish between light and dark and colors he is, by any measure and legal definition, blind. He cannot get sufficient stimulation via his sight and he gets none via his hearing. Please think about this for a second – sensory deprivation can be so devastating that it is used as a drastic interrogation technique. Lacking that stimulation means that it has to be made up for in other ways – otherwise Sean runs the very real risk of severe mental problems.

The best way is through gross motor activity. Sean loves swimming and walking. Swimming is something that he does very very well. He loves the water, he is safe and supported and confident. He swims mostly in the deep end, taking breaks by just floating on his back. he likes to jump off the diving board. The staff at his favorite pool (Beck, in Aurora Colorado) know Sean very well and they know Doc, Sean's careworker.

Sean swims, walks and goes to Subway for his lunch every day. We picked Subway because he loves their sandwiches and the staff at Subway will load his sandwich with the healthy stuff. Funny as it may seem Subway are a vital piece in our diet plan for Sean (which has worked very well).

Doc picks Sean up from the house at 10:30 on weekday mornings. It is a 30 mile or so drive into Aurora and along the way Doc and Sean take a walk in the park where Doc practices sign language with Sean, encouraging Sean to sign along with him as they walk. Then it's off to Subways for the sammich and then, joy of joys, it's off to Beck for swimming. Doc drives Sean to my work and drops him off at 4:30 and Sean and I bowl on home together from my workplace at National Jewish Health in Denver.

When we get home (around 5:30 or so) I am usually greeted by two large dogs who need to go out for their walk so it is a quick change and then two dogs, Sean and I go for an evening walk. Then it's time for dinner.

That's pretty much how it works during the week. Nancy gets her Sean ready in the morning, bathed, teeth brushed, dressed and so on. She then makes his breakfast and feeds him and gets him set up and in shape for the day. When we get home in the evening she is the one who cobbles together the Sean dinner, who brushes his teeth and gets him set up for bed. Nancy refers to herself oft times as “The Comfort Coordinator” which is a very loving and apt description. Boy you should see her fuss around Sean – getting a soft T shirt for bed time, soft shorts to wear making sure he is one happy lad.

As you can tell, I hope, from this outline, Sean NEEDS the time during the day with Doc. He needs the physical activity the contact with the world. He needs the time away from just being in his own closed off world. When all this activity is happening, he is a happy man. When it gets interrupted, it brings on anxiety and hurt and upset.

The Feds and State of Colorado via the Division of Developmental Disabilities are trying to change all that. They wish to remove over half of Sean's outside time.

Why? Because some bureaucrat invents a scale that other bureaucrats just seem to fall in love with. It enables them to assign numbers to a person, a 'score”. With that score they can interrupt services, deprive the disabled and all with the justification of “the scale”. There appears to be nothing on the scale about whether or not the client is damaged by the actions taken, no way to estimate the destruction caused or the price that will have to be paid.

Allow me to elucidate. If the current plan from the DDD goes ahead, then Sean's active hours will be cut in half. Half of his outside stimulation will be GONE.

I work all day so I cannot make up this shortfall. Sean is way too strong for Nancy to do a lot of physical exercise with. Both Nancy and I are in our mid fifties and we cannot hope to keep up with a fit man of 29. So Sean will be forced back into his own sensory deprived world. And that will make his behavior worsen. Deafblind people like Sean can become prone to bouts of seriously hurting themselves via banging their heads against the floor or walls or punching themselves. We have seen deafblind people so stimulus-deprived that they must wear helmets to keep themselves from being killed by self-head-banging. And is the "quality of service" to Sean and others being given one thought by the administrative procedures being implemented TODAY, July First? Hardly.

The only realistic way we have to control Sean's weight is via exercise – it has taken us five years of working on diet and exercise to get his weight to its current level – the ideal weight for his height. This level of fitness also helps to keep his seizure disorder under control – thanks to his medication and his life style he has been seizure free for over four years.

Make no mistake – this action is going to damage Sean.

This has all taken hard work to set up and then to maintain.

And now – for some obscure reason that we do not understand – and which NO-ONE seems capable of explaining to us, the feds and state wish to kick it all over.

We have written to Governor Ritter – who, of course, did not bother to reply. We have written to our Congressman who has not bothered to reply.

There have been many who have replied – all of our friends on Facebook, our friends from around the country, the Archbishop of Denver, Sean's caseworkers at Denver Options and we thank and love them all.