I am a concerned parent and full-time caregiver and oppose the plan to shift parents who are paid caregivers away from Consumer Directed to become an employee of an agency. I have two children with disabilities, including one who has been homebound due to the school not taking appropriate care of her since November – this was not by any personal choice but mandated through state agencies. My hours have not changed, and I am working non-stop in ways beyond a typical parent would for any age child. I have tried diligently to get other caregivers in my home; however, most are daunted by the paperwork, low pay, and that my child cannot even communicate. Not to mention they need assistance toileting, wiping, with preparing meals – sometimes multiple to get them to eat as my child suffers from feeding aversion. And when her needs/limited communication is not understood she bangs her head on any surface or person in frustration.
The proposed changes will impact my family enormously, as while I still search for other caregivers, even the school could not provide adequate care. And if the school cannot afford adequate care, and I am not receiving responses, there are no other providers in my area/ no one will work for this small hourly rate to possibly be headbutted, run away from/ I cannot work outside of the home because of the intense care demands of my child such as elopement even from inside her school to the exterior. Her constant headbanging documented on over fifty times daily, and sometimes over one hundred times with people from outside the home, those primarily school environment, including special needs and specialty masters and doctorate trained special education and therapy personnel.
If the state wants oversight of families, put consistent criteria in place that a Service Facilitator can implement and require all Consumer Directed providers to have a Service Facilitator.
An "agency" is not an expert on my child. And apparently, even the public school system has failed her so badly she is home per state mandate. Her sibling comes home just about everyday needing incredible emotional support, and while can perform academically, is not performing at age social emotionally, often misses important social ques and needs constant support. And often comes home with bruises she cannot account for. Or my child with a sleep disorder that will not sleep until midnight, no matter what time she awakens, and then is usually up in the early morning for hours.
And please, respite hours should still be available since as a caregiver, this requires time on and off the clock and is a 24-hour job. A break or respite is needed by anyone providing care for another person. And respite hours can be billed at times that allow for the person to have a full-time job, and have this respite job to earn more money when their schedules allow (like a full-time county school paraprofessional in the special needs classrooms, who although she has a family, could work her schedules on the odd weekend or evening to provide a few hours.
A few hours which may not seem a lot, but enormous for a family who is trying hard to address everything but even picking up siblings from the school if they have a cold or appointment sets off the child who is homebound into full meltdowns. I also cannot draw on my husband to leave work every time there is a day-time event or it would impact his work.
Please you cannot fathom my every day. Please don’t make things harder, with more hoops.
Thank you for listening, and your time. The Welter Family