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Currently I am battling Medicaid managed care Insurance in Texas to get my mom all of the services she is entitled to as a patient on a ventilator 24/7. The Insurance keeps putting up roadblocks. I would like to reach out to members to see if they have had the same problems, to compare notes and see if they were able to resolve issues like I am having. A little background - In Texas family can be paid caregivers (except a spouse), I am the daughter and have taken care of mom 12 years, only recently (one year) has she been on the ventilator. At the Acute care hospital they tried to get her off the vent but her Medicare ran out before they were successful. We had two options at that time, 1) put her in a nursing home for vent patients - not possible because the closest one is hundreds of miles away and would not do that anyway because of her delicate condition, the care she needs is just not there. Option 2) Receive training at the hospital in all aspects of Trach care, we chose this option because I had already been taking care of mom for 8 years. Now instead of increasing attendant hours since her condition has technically declined they have "decreased" her attendant hours (mine to the point that I can no longer meet financial obligations)significantly. So I am interested in hearing from anyone having trouble with Medicaid managed care. Look forward to hearing from you!

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I don't know the name of the agency but it is through HCS (home and community services) , a Medicaid waiver program under DADS. My friend does work outside the home and so does her husband. They are not paid for the care that they provide their son. They had to give up that type of plan in order to keep their son out of the nursing home. The nurses do ADL's like you have mentioned. They got the night hours and weekend hours when their son got the vent in July. He has since been weaned off it during the day. I don't remember how long it took DRT to take their case but it probably took a few months to resolve. Do you have a state care coordinator who can intercede with your agency? In the HCS program we have one and that person can be contacted when there needs to be a change in service hours due to a change in needs. I am only familiar with the HCS program because my son who has autism and several friends who also have children with disabilities are in it. I am not familiar with other programs in Texas. I wish I knew more to help you.
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@Ginach - What agency (Home Health) is providing his nursing hours? What State program are they using or going through? How many hours of care have they been able to get weekly/nightly? Does your friend work outside the home and have nurses there when out? Did it take long for DRT to accept their case? Are the nurses doing ADL's (bathing ,feeding, Trach care, etc..)? Is your friend a "paid attendant" for some of his care? Probably have lots more questions because it sounds like they are receiving A LOT more care than I have and Mom is on a vent 24/7 so that means 24/7 care by me, I currently have no one helping me. Also the MCO Insurance just did a new review and they are "taking away" the Protective Supervision hours we have had since 2012. In other words they are saying that I can take care of mom 168 hours a week since I don't have another job, I work for the agency that provides her attendant hours. Since mom can't be left alone because of the Trach then it would go without saying that I can "never leave my house" by their rational. Really appreciate you being a - go between - just this far you have raised a lot of questions that make me want to did deeper to see what else is out their. One thing is for sure I cannot continue to work 24/7 for much longer, my health is at risk also.
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My friend's son is an adult but he has been disabled from birth. She had a hard time when he turned 21 and the state wanted to take away his nursing hours and serve his needs in a nursing home. DRT threatened to sue the state of Texas and they were able to get his nursing hours restored. He did not have a vent at that time. He only got the vent recently and with it came additional night nursing hours.
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@Ginach - yes the children's vent program has that benefit where they can have a nurse come to the home at night. In the state reg's I have found a section that provides skilled special nursing for Seniors and I am looking into that. As to your friends, they probably have, but have they tried finding a nurse that lives in that area? I have not come across the DRT, I will look into that immediately, thanks for the link!
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@Babalou - thank you for your reply but the type of care is not the problem. It is the Medicaid MCO not knowing their own rules/State rules/Federal rules and what they do know they are not applying them in a way that meets her needs or they apply them inappropriately. They also are NOT obeying the Fair Hearing Officers orders (we won the State review process) so last week I had to file another appeal request to fight them on yet two more issues because they have reduced her benefits that she is entitled to.
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I live in Houston, Texas and have a friend who has a son who has a vent at night. She has the nursing hours through HCS (Medicaid waiver program) but cannot find a night nurse who will come to her part of Houston, not the safest part of town). I would suggest you contact Disability Rights Texas (disabilityrightstx.org), perhaps they can advocate for you. They have helped other families I know keep their kids out of nursing homes. I don't know about parents though.
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I'm answering this mainly to bump this back to the top. Is Hospice an option at this point?

Sometimes it's good to bring in hospice to get a patient stronger. They can then be discharged from Hospice and go back on regular Medicare and/or Medicaid.
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