I am writing to implore you- please do not take away the ability for parents to be paid caregivers for their children who need support. (I also believe that spouses should be able to be paid for caring for disabled spouses as well.)
My daughter was not born disabled. She was diagnosed with brain cancer as a toddler and became disabled from the tumor and the treatment. I was a new parent to twins and it was all very overwhelming. I had set myself up with a Masters Degree before I had them to make sure I would have a good plan for working after they were born, but I still haven't gone back to work outside of the home 15 years later.
I would like you to imagine the amount of doctors appointments, therapy appointments, and other special supports that go into caring for a child with disabilities both mental and physical. It is certainly at times a full time job. Certainly when my daughter required chemotherapy for 53 weeks, that was not work that could be hired out.
There was no way for me to get paid to be her caregiver for the first 11 years she was in this program. I would be harangued by our Medicaid representatives that we must hire outside help. They would threaten taking away the medical benefits if I didn't regularly get someone into my house to help.
1. When you have a disabled 3 year old, there are so many things you cannot hire out for. You cannot have someone else drive your child the hour to specialist's appointments and make medical decisions. That's impossible and not even something we would want. 2. Living in a rural area, there was no one that wanted the job. If I hired someone, I had to have them come for long stretches of time to make their drive to my home worth it. That is not what was needed or wanted. 3. It may be cliche, but the parent is the best caregiver for the child. The parent knows everything about their child's care. 4. It is a big burden on the parent who is already caring for a disabled child to also advertise, interview, train, and manage a personal attendant. 5. The pay is not enough to attract people you would necessarily want caring for your child. 6. A parent's work with a disabled child is very valuable.
So what did we do? We had people come in once in a while to fulfill the requirement, but for the most part you had me, a mom with a Masters degree in education, doing the work for free. You also had a father who worked a lot of overtime at work so that we could afford to do this. We lived on a tight, tight budget. You also had a mom who was often so anxious about losing the medical benefits by not having an appropriate personal attendant that she would very literally lose sleep. The stress of it all was overwhelming for 11 years. There was always a nagging feeling that I needed to wave a wand and find the perfect personal attendant, that I was not a good mom for not being able able to find one, and fear that she would lose her medical benefits and we could potentially go bankrupt from medical bills or we would have to forego the care she needed.
America is willing to bail out bankers who make bad business decisions without barely batting an eye, and yet it is now being said that we will no longer be able to be paid as caregivers. If you can believe it, because I am my daughter's Employer of Record, I still cannot be paid; my husband is the parent being paid for the work. I tell you, it's easy to start to lose hope in this society as a parent of a fragile child. Please do the right thing and keep these new decisions to allow parents to be paid as caregivers in place.
Parents have been able to be paid since right after the Covid-19 pandemic began. Family budgets have now included this extra pay since 2020. We are going through a period of inflation that is downright scary. What effect do you think it will have on the parents and children if you take this away and upend their budgets? What effect does it have on a mother's mental health when you tell her that she had better hire someone to care for her child, but when she does 24/7 it is valueless? Or have a mother clean her house well to have a personal attendant over so that she can sit in another room and hear her child giggling and playing with someone else because it's a Medicaid requirement?
It is time to continue to value the parents' work in caring for disabled children. I try to imagine what our life would be like if this was already in place back in 2010 when we started getting these benefits. It would have been a whole lot better.
I am once again losing sleep wondering if we will lose this vital support for our family. Please take us off of this roller coaster and keep the changes made in 2020 permanent.
Thank you for reading.