transitioning a medically fragile teen W/ nursing care into a pa waiver
My daughter was 11 yrs old when she was in a car accident and will soon be turning 21. Does any one have a sick teen not on a vent trasitioning into a waiver. The state has a Brain injury waiver but no real medical enity attached which I cannot figure out. They do have a Dallas waiver with a medical enity for kids on vents but Steph does not use a vent.
The medical component is the dollars needed to have nursing care while I work in the evenings and sleep at night. Nursing care is a very expensive component $ 20,000-25,000 a month thru an agency. There advise would be to put her in a nursing home, which I will not.
How sick can she be: She cannot walk, talk and is fed thru a G-tube. She has seizures and has shuts in her head. She has rods in her back, she cannot protect her airway and is a high risk of aspirating. She requires 24 hours care ,she has no self help skills and shouuld not be left alone. It is not just the rolling her and position changes plus the brief that she needs help with.
She has alot of medical problems due to the brain not telling the body what to do. She has a metabolic disorder where she urinates out all her calcium making her bones see thru. She is filled with kidney stones and lives with alot of pain. Her medicine cabinet is filled with drugs trying to replenish what we take for granted, calcium,potassium, phosphates and so much more. Did you know if your potassium gets to low it causes cardiac arrest and seizures . This is just a dot of knowlege of what is wrong. The question is how do I keep her home with me???
The medical component is the dollars needed to have nursing care while I work in the evenings and sleep at night. Nursing care is a very expensive component $ 20,000-25,000 a month thru an agency. There advise would be to put her in a nursing home, which I will not.
How sick can she be: She cannot walk, talk and is fed thru a G-tube. She has seizures and has shuts in her head. She has rods in her back, she cannot protect her airway and is a high risk of aspirating. She requires 24 hours care ,she has no self help skills and shouuld not be left alone. It is not just the rolling her and position changes plus the brief that she needs help with.
She has alot of medical problems due to the brain not telling the body what to do. She has a metabolic disorder where she urinates out all her calcium making her bones see thru. She is filled with kidney stones and lives with alot of pain. Her medicine cabinet is filled with drugs trying to replenish what we take for granted, calcium,potassium, phosphates and so much more. Did you know if your potassium gets to low it causes cardiac arrest and seizures . This is just a dot of knowlege of what is wrong. The question is how do I keep her home with me???
Replies to This Discussion
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Permalink Reply by Ana and Joel Emilio on -
Good Evening Kim and Steph:
You have described Steph special health care needs but I am wondering if your daughter is registered in the MR sistem. If you want to contact us, we can guide you to what may be an alternative for funding for Steph after 21 to continue living at home. Ana 267-773-5296 or Emilio 267-773-5289.
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Permalink Reply by Jaclyn M. Kratzer on -
Try Act 150 waiver
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Permalink Reply by Kim Wolf on -
Reply to question 9/9/09 :Stephanie is apart of the familly support waiver but I would like her to be in the consolidated waiver. She presently has homebound services thru the school which provides OT,Speech ,Music therapy and a Special Ed. teacher. The school district has been wonderful. I have respite hours thru her waiver, and Welfare pays for her nursing. When she turns 21 the schooling will end by June, who covers her therapies such as OT and who covers her nursing. She is not going to all the sudden at 21 be healed. Yes the state has a brain injury waiver but not alot of dollars for nursing. The Micheal Dallas waiver has a component for nursing but only for vent dependant people. I am not sure about the Act50 waiver that a reader suggested but I will look into that also,
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