Well, we are in it now

Over the last weeks we have been spraying the Colorado state government with e-mail, we have been organizing friends into groups and soliciting help to try and back this runaway train up the tracks and away from our son.

Thanks to the unwavering and loving support of Carl and Holly Carlson, Paulette and Terry Mahurin we have started putting things together. We have sent e-mails to agencies, to TV stations and to people in order to gather support. Both Nancy and myself are just humbled by our great friends and their organizational and writing and support skills. It is thanks to them that I think we can actually ameliorate this situation.

I wrote to the Archdiocese of Denver asking for the support and help of Archbishop Chaput. Within hours of sending that e-mail we had received e-mails of support from the Chancellor of the Archdiocese and from Archbishop Chaput himself - in Rome on church business and still finding time to reach out. It is messages like these that really do help.

Sean is doing fine for the moment, the radical changes that the Department of Developmental Disabilities is trying to visit upon us will not be in full force yet, though as of tomorrow, the new, repressive regime begins.

We are sending a request in to get the material relating to the whole SIS (Supports Intensity Scale) system of "scoring" that is being used to justify throwing our son under the bus so that we can possibly get some expert review of it. We are also requesting copies of the full evaluation that was done on our son - and by whom, because no-one that we are aware of ever did any inspection or overview of Sean or us.

If you are reading this - please take action - severely disabled people and their families are being ridden roughshod over. It is only the loud expressions from interested and supportive people that will get these apparatchiks to even take a look at what they are doing. Go to the Colorado state government web site, send messages of protest to Governor Ritter.

Just as an aside - if you live in Colorado Congressional District 7 and have Ed Perlmutter as your Rep - well you have our sympathies. Apparently Ed feels it is beneath him to actually correspond with his constituents. No doubt he is busy passing tax increases while supporting the slashing of support for the disabled.

They can't take care of themselves? Throw them under the bus.

The state of Colorado is slashing the funds that pay for Sean's daily community interaction, which mainly consists of his swimming. But that's not all. The state is not only slashing funding for the developmentally disabled, but it is also heavy-handedly dictating changes in HOW the caregiving is going to be done. And it gets worse: this is all being done QUIETLY and SWIFTLY.

In early May, Sean's caregiver attended a meeting at Denver Options in which he and other caregivers were informed that the state is changing their rate of pay. The pay cuts talked about were huge. Caregiviers do not make much money. Doc is fortunate in that he is able to live by doing the work that he loves. He has several clients and he hardly takes time away from them. If that wasn't enough, there was some sketchy information about changes that were also coming to the way these caregivers could provide their services. Instead of the individualized activities that the developmentally disabled clients and their parents/guardians have worked so hard to develop, there were rumors about having to throw clients together into group settings instead, regardless of the clients' needs, abilities or interests. Warehouse them! Great!!

OH, AND THIS IS ALL GOING TO START JULY 1ST BY THE WAY.

It has taken years to find and stabilize care for Sean. Sean needs one-on-one care because he is deaf-blind. He can't interact with groups of people. He can interact with a single person at a time, and it has to be a person that he likes. He has had the same main caregiver now for nearly 8 years and for the first time in Sean's 29 years, he has had a stable friend that long other than us, his parents. He is finally living a stable life with a routine that works for him. FINALLY. And now the State of Colorado is throwing him and other developmentally disabled people UNDER THE BUS for its own convenience? And SLASHING THE FUNDING that these people need? How much would it cost the state of Colorado to care for Sean 24/7??? A WHOLE LOT MORE than what has been spent on him now.

And there's more: Not only was Doc informed that his pay is going to be slashed, but that the state of Colorado might require him to go to college and get some sort of DEGREE in order to continue doing the job he has been doing for the last 10 years.

In times past, one caregiver at a time would suddenly disappear from Sean's life. He never had a real "friend" that didn't just disappear one day. And yes, while we all go through losing contact with friends from time to time, for Sean it's a very different experience. There is no explaining the sudden absence to him. There is no explaining to him that someone who has been part of his life for a year or more is going to move away, or change jobs, or or or or.

Our friend "Doc" has been Sean's main caregiver since 2001, and he and Sean have created a true bond. There is no one else in Sean's life who means as much as Doc, except for us, Sean's parents. We are his constant 24/7 caregivers.

Since that meeting in May, we have all been very worried and upset. Doc of course was mortified. The "information" at the meeting was alarming and incomplete. Supposedly the state was going to finalize the pay rates and all the criteria about the actual delivery of services later that month. But the information was so lacking in substance at the meeting that all that it did was create chaos. Chaos that went straight through everyone right to the clients themselves!

Sean is very astute at picking up on peoples' emotions. He has a very keen sense of this, I'm sure because it's one sense he relies on. Well, after that meeting last month, Sean began sleep walking again. He hasn't done that since he was about 10. He began sleep walking. And then he began waking up and coming into our bedroom and waking us up. He hardly slept. He continued to go out during the weekdays with Doc, and swim, but he wasn't sleeping. And neither were we.

Then the chaos escalated! The state was supposed to get all the specifics to Denver Options so that Denver Options could inform all their families about the changes. And when was this going to happen?? We got a notice in the mail about a meeting to take place on MAY 21st. MAY 21ST??? And all these things were going to happen on JULY 1st??? Just 8 weeks from then? We were livid. Well then the state piled on! It turns out the state of Colorado didn't even finalize anything or get any relevant information to Denver Options AT ALL. The meeting got CANCELLED.

We have received no phone calls from Denver Options about this. I called to find out why we are not being informed of what all this means. I was told that D.O. is FIRST contacting the families of the clients whose HEALTH AND SAFETY are effected by these changes. These sweeping changes that the state is instituting within a few weeks are actually going to put people AT RISK. Is the state ready to accept the CONSEQUENCES of instituting these changes so SWIFTLY AND QUIETLY?

I AM SHAKING as I write this. Can't continue right now. But there will be more.
Nancy