Beginning of 2020 the Coronavirus hit the United States. No one knew where this virus would lead us in our day-to-day lives. A lot of us were required to work in our “essential” job putting a strain on our home life, especially if you had children with special needs.
Bringing in people to care for your medically fragile children became impossible. Not only did you not want to bring the coronavirus into your home but people didn’t want to work and take the chance of contracting the virus. Both of these scenarios lead to families making a hard decision.
Our family was one that had to make a hard decision. My husband and I decided that I would stay at home and take care of our two children that are on the CCC+ waiver. (At this time parents were allowed to keep their minor children on this waiver.) Without this our family would have struggled and possibly lost our home. But we were able to make ends meet and continue with day-to-day life. Now that the pandemic is coming to an end, we are in jeopardy of losing this benefit.
Finding a care giver for one child with special needs is hard, imagine finding a care giver to take on two special needs children or finding two different care givers. People are not wanting to work and the people that you would trust keeping your special needs children can’t leave a job that guarantees full time hours.
Every six months not only does a special needs child go through re-evaluation but parents have to fight and defend the attendant hours their child is receiving. MCO’s cut hours with every case and if you don’t advocate for your child their benefits decrease. This makes it impossible to guarantee an attendant a steady income.
Gas prices are higher now and families who live in rural areas find it even harder to find employees, they can’t afford the gas and the hours are not enough to compensate the drive they are having to make daily.
Special needs children who are on the spectrum struggled during shut down; socialization, out bursts in behavior, depression and high anxiety. Making it hard to find someone besides a parent that can handle their behavior.
I quit a job that I worked up the ladder in, made good money and held a high title in my line of work. Not only would my children loose having me at home but finding a job in my line of work where I left off will be impossible, I would be required to start at the bottom making anywhere from $10.00-$15.00 an hour less then where I left off.
This pandemic effected the entire world and we didn’t have full control to what would happen day to day. But this is something our state has control of. Please don’t remove a benefit that helps special needs children. So many benefits are being removed and wait lists for therapies are a mile long. Being with the parent helps these children live day-to-day life. No one will take care of a child or advocate for a child like a parent.