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!!