When we took emergency custody of our disabled nephew after he was severely neglected by drug addicted parents, we knew it would require sacrifice from ourselves and our children. We stretched finances to purchase a larger vehicle, paid sitters so my husband could work while I stayed inpatient to  learn his care through multiple procedures, and even moved to a home better able to safely accommodate him. 

When I was told that attendant/respite care was available, it was a light at the end of a very dark and draining tunnel. Unfortunately, finding someone who was over 18, willing to work full time (we were approved for 35 hours/week) with no benefits, and who didn't need to pay childcare ($9.22/hr doesn't much support paying typical bills, much less child care and health insurance) quickly proved difficult. When I finally found an attendant willing to work under those circumstances, she went months without pay as her paperwork was mishandled and excuses were made. Many errors were made among our local social services department which resulted in this baby losing his insurance entirely with no warning. It wasn't until I emailed the Director of our local DSS that his Medicaid was reinstated, but we lost his MCO for the 40 day waiting period (due to no fault of ours- it wasn't a renewal issue, etc), thereby expiring his approved hours. Again, I had to beg our attendant to stay on while we sorted this out-- unpaid on the hope that I would be able to get retroactive approval and back pay. (This didn't happen.) 

When the DMAS7 was introduced, our service facilitator was no help, showed up with a personal cell phone to record our sensitive information/fill out forms, and left me with the massive stack for the doctor to fill out "oh, and it's due in 7 days or you'll lose services". Have you ever tried to get a well child appt with forms back in your hands in 7 days? Nearly as quickly as it was forced upon us, DMAS7 was repealed. 

Now we have EVV. If you've made it this far, I'll let you know we lost our attendant and have been unable to replace her. When I approached her about returning, the moment she heard about "Cell Track", she apologized and stated she'd not be willing to put such an untested, invasive app on her phone. As I watch other's experience errors, inability to log time, pay delays, battery drain, etc, I have no way to reassure her. 

I have left my job within a sole prop my husband and myself own (in fact, I had to restructure our business so I could become the EOR as I already had my EIN tied to our business). My husband has had to turn down work to help me juggle the needs of this additional child, we have made considerably less money this year than last. We went from paying for a marketplace health plan to Medicaid. Last month I had to apply for food stamps. This month I started anti-depressants, as caregiver burnout and lack of sleep consumed me. We are doing everything in our power to see that this child doesn't end up in foster care or an institution, as both are already overwhelmed systems, but to what end? I can't help but think we are costing the state much more than making attendant/respite care a straightforward process would.