Your Tax Dollars Work In Mysterious Ways
I lost my patience yesterday after waiting for several weeks to try and get some help with Scott while my neck, arm and shoulder heal. I had an appointment at the neurologist office all the way down at Presbyterian-St. Lukes. I had made the appointment 3 weeks ago believing that Don would have Scott. Unfortunately, Don discovered he had a class on Tuesday so we had to change his day to Monday. I only found that out on the Thursday before so there was no time to change anything.
We briefly considered having Scott sit in the break room at Presbyterian since his sister works there. One of my daughter's co-workers actually has her 40 year old DD sister do that because she is on the wait list at DP. She has language and is more socially adapted than Scott. Still another sad story of how people with DD are neglected in Colorado.
At that time of day there is a shift overlap and Sister could have taken her break and watched him. We discarded that idea because of the complexity of the timing and the risk of getting him upset. What if she had to leave him alone in the break room and he hit someone or ran away into the hospital? Nope. I ended up loading up a bag of snacks, writing pads & puzzles & taking Scott with me. He hates going to Drs and I had to be worried that I would not get to speak with the Dr. as I needed and that he would throw a fit, hit someone or wet his pants. All of that on top of feeling very unwell. The most ironic part of all this is the Drs. believe my injury is due to the physical wear and tear I have suffered in caring for Scott. What a life!
When Scott is being cared for by anyone but our family, they are paid, by the taxpayers, and have access to time off or are able to get a substitute to care for Scott while they recover, go to their appointments or take a day off (Resource Coordinators/Supported Living Counselors). Not the case for families. We care for our family members for free, 24x7, and don't get the least little bit of backup or support.
I hate to get emotionally worked up to the point of calling everyone in the State of Colorado involved with the DDD system but that is usually the only way to get things going. I try to keep it down to once a year but I do reach a breaking point.
Within an hour of calling up the line of authority, Dr. Hogling from DDRC returned my call and had Scott's RC on speaker phone with him. The problem is not solved because they are not able to get clarification on whether Medicaid can pay for "Personal Care" under the SLS waiver that Scott falls under. They say they are working on the problem and I believe they are frustrated and concerned that clients are not receiving appropriate, cost effective care.
I also received an email from Sharon Jacksi, who heads the DD section for CDHS, this morning. She had written it last night at 10:06 pm so I have to say "Wow" and "Thanks". I underestimate the attention and time these people devote to their jobs just like I do. Too bad the legislators and other bureaucrats can't get behind streamlining the rules and regulations so that none of us have to work so hard to make sure Scott gets the care he needs.
I see no reason why "Personal Care" would not be covered under the SLS waiver. Obviously, this waiver is utilized by families who care for their adult family member at home 24x7(saving taxpayers huge numbers of dollars in the process). Why would it not be expected that Scott would sometimes need to be watched at home and helped with his life skills if I am sick or, God forbid, that I needed a day to myself? Does any one of these people have a job that they actually can't call in sick or take a vacation day, like I do?
Instead of having a person provide that care under the SLS waiver, I have actually been asked why Scott's Dad, brother, sister or even a neighbor couldn't watch Scott. Gee, I don't know, maybe because they all have 40 hour (or more in Sister's case) per week jobs and pay taxes that provide Medicaid dollars. My husband and Scott's siblings have always and they will always step in when needed but they have lives and jobs of their own and can only do so much. My neighbors work and have lives too and also pay taxes, some of which also goes to pay for Medicaid which they have been led to believe provides care for people like Scott.
Why not direct pay for direct care to families who could then use it to pay for the help they actually need in caring for someone 24x7? Minimum wage for 8 hours per day. I can choose to hire someone to help a few hours, go to the Dr or Dentist so I don't end up needing 24 hour a day care myself. How many adults in Colorado would not be in out of home care (much more expensive and not ideal for many people) if we just supported the family in such a simple and inexpensive way. How many Moms & Dads would not cry themselves to sleep at night worrying about having to place their adult child out of their home if that is not in the best interest of the adult child, if they just had a little help. It's a wild and crazy idea but maybe it will catch on
We briefly considered having Scott sit in the break room at Presbyterian since his sister works there. One of my daughter's co-workers actually has her 40 year old DD sister do that because she is on the wait list at DP. She has language and is more socially adapted than Scott. Still another sad story of how people with DD are neglected in Colorado.
At that time of day there is a shift overlap and Sister could have taken her break and watched him. We discarded that idea because of the complexity of the timing and the risk of getting him upset. What if she had to leave him alone in the break room and he hit someone or ran away into the hospital? Nope. I ended up loading up a bag of snacks, writing pads & puzzles & taking Scott with me. He hates going to Drs and I had to be worried that I would not get to speak with the Dr. as I needed and that he would throw a fit, hit someone or wet his pants. All of that on top of feeling very unwell. The most ironic part of all this is the Drs. believe my injury is due to the physical wear and tear I have suffered in caring for Scott. What a life!
When Scott is being cared for by anyone but our family, they are paid, by the taxpayers, and have access to time off or are able to get a substitute to care for Scott while they recover, go to their appointments or take a day off (Resource Coordinators/Supported Living Counselors). Not the case for families. We care for our family members for free, 24x7, and don't get the least little bit of backup or support.
I hate to get emotionally worked up to the point of calling everyone in the State of Colorado involved with the DDD system but that is usually the only way to get things going. I try to keep it down to once a year but I do reach a breaking point.
Within an hour of calling up the line of authority, Dr. Hogling from DDRC returned my call and had Scott's RC on speaker phone with him. The problem is not solved because they are not able to get clarification on whether Medicaid can pay for "Personal Care" under the SLS waiver that Scott falls under. They say they are working on the problem and I believe they are frustrated and concerned that clients are not receiving appropriate, cost effective care.
I also received an email from Sharon Jacksi, who heads the DD section for CDHS, this morning. She had written it last night at 10:06 pm so I have to say "Wow" and "Thanks". I underestimate the attention and time these people devote to their jobs just like I do. Too bad the legislators and other bureaucrats can't get behind streamlining the rules and regulations so that none of us have to work so hard to make sure Scott gets the care he needs.
I see no reason why "Personal Care" would not be covered under the SLS waiver. Obviously, this waiver is utilized by families who care for their adult family member at home 24x7(saving taxpayers huge numbers of dollars in the process). Why would it not be expected that Scott would sometimes need to be watched at home and helped with his life skills if I am sick or, God forbid, that I needed a day to myself? Does any one of these people have a job that they actually can't call in sick or take a vacation day, like I do?
Instead of having a person provide that care under the SLS waiver, I have actually been asked why Scott's Dad, brother, sister or even a neighbor couldn't watch Scott. Gee, I don't know, maybe because they all have 40 hour (or more in Sister's case) per week jobs and pay taxes that provide Medicaid dollars. My husband and Scott's siblings have always and they will always step in when needed but they have lives and jobs of their own and can only do so much. My neighbors work and have lives too and also pay taxes, some of which also goes to pay for Medicaid which they have been led to believe provides care for people like Scott.
Why not direct pay for direct care to families who could then use it to pay for the help they actually need in caring for someone 24x7? Minimum wage for 8 hours per day. I can choose to hire someone to help a few hours, go to the Dr or Dentist so I don't end up needing 24 hour a day care myself. How many adults in Colorado would not be in out of home care (much more expensive and not ideal for many people) if we just supported the family in such a simple and inexpensive way. How many Moms & Dads would not cry themselves to sleep at night worrying about having to place their adult child out of their home if that is not in the best interest of the adult child, if they just had a little help. It's a wild and crazy idea but maybe it will catch on