Disabled Lives Matter... Lack of care forcing disabled children and adults into facilities

Disabled Lives Matter... Lack of care forcing disabled children and adults into facilities
Why this petition matters

For 22 years I have been a single mother of a special needs child! Although he is severely disabled requiring 24 hour care...it is not his “disability” that makes having a QUALITY OF LIFE so hard for the special needs individual AND the caregiver...it’s the circus hoops you have to jump through. Yes I said, AND the caregiver! Caregiver exhaustion is VERY real! It causes severe illnesses and disabilities and PTSD to the caregiver!!! The state thinks that they have got it figured out. Well I’m here to tell you with over 22 years of hands on experience, that is the farthest thing from the truth. A lot of what they do have in place looks good on paper...but the truth is there are still sooooooo many holes EVEN if everything they had on paper actually was utilized. But the sad fact is what our State of Indiana has in place isn’t working AT ALL! Yes they will pay for home health care. However, it’s HIGHLY unlike it that you can get it (be staffed) so we are forced to put our kids in homes. I have been turned down by over 45 agencies in two months with no prevail! I swore I would never be one of those parents to “throw away” my child(that’s what it feels like)! But, after 17 years I had NO choice. For the first time, I understand why all these sweet SPECIAL NEEDs HUMANS were in “shelters” like the humane society! We are forced to! We as humans, it is physically impossible To do by yourself 24 hours a day(with most special needs)! Do these individuals in the facilities “care” for them?! Absolutely! To the best of their ability! I have sooooo much respect for those who helped care for my son, But our state doesn’t even have a patient to caregiver ratio law so they are sooooooo overwhelmed also! The simple fact is...we should not be forced to throw our loved ones into a facility. They get paid around $500 a day on average just for him to be there. Not to include additional monies they get for them. Yet they don’t pay enough to home health care providers to keep them home that our state of Indiana is in a serious crisis of home health care. If they can’t staff a full schedule of caregivers, providers just won’t take your case on at all. Leaving you with absolutely NO HELP! Now, How does this make any since?! We are giving money to other countries, not to take care of our own citizens! These are HUMAN BEINGS and Americans!!! I have paid my taxes...I am a Navy Veteran! But can’t get one single caregiver in my home. Every agency tells me 1. We can’t staff you because we don’t have caregivers because of pay 2. We don’t accept Medicaid pay source because they don’t pay quick enough and are difficult to work with 3. There is so much red tape/hoops/liability Mumbo jumbo they don’t want to take on his needs 4. It’s where you live which is 25 minutes from the office. This desperately needs to be re-evaluated! This needs to be re-evaluated with individuals such as caregivers, parents, doctors, facility workers, health care agencies, family members...real people with real experience of what will take to fill the holes. Not politicians, with absolutely no blood, sweat and tears (real experience) behind it! Would you want to have a Life threatening surgery by a politician who is not a surgeon!? Absolutely not! We are not talking about unrealistic modifications here. However, this blanket concept of disabilities is NOT meeting our Indiana disabled citizens needs! Please help me to be heard! Please help me fix this unethical, negligent And discriminatory process. Yes I said discriminatory! Treating one disability all the same is extremely discriminatory! Please sign this petition for state modernization modifications to fit our disabled love ones in today’s society!
Thank you so much for your attention!
Jocelyn Appleton