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Congress must expand home care for children with disabilities

In this file photo, a flag flies at the U.S. Capitol in Washington D.C. Congress has a measure to protect businesses from COVID-19 lawsuits, but has yet to act on it, and Gov. Doug Ducey is content to wait on the federal measure rather than call the state Legislature into special session to pass liability legislation. PHOTO COURTESY ARCHITECT OF THE CAPITOL

In this file photo, a flag flies at the U.S. Capitol in Washington D.C. PHOTO COURTESY ARCHITECT OF THE CAPITOL

Eight months into my pregnancy, I learned that my daughter, Hannah, was going to be born with extra needs. When she turned 4, she was diagnosed with cerebral palsy, optic nerve hypoplasia, severe sensory impairment, and a moderate intellectual disability.  

 Hannah is 17 now, and needs to have help with every aspect of self-care. She also cannot distinguish between safe and unsafe people or situations. Someone has to be with her every minute of every day. 

Courtney Burnett

Courtney Burnett

When you have a special needs child, your options are either hiring a caregiver or quitting your job and taking on the work of caregiving full time. This puts parents in a financial bind, because it’s difficult to survive on one income and almost as hard to gain access to personal caregivers. 

 Early on in Hannah’s childhood, we lived in Washington state, which at the time did not offer support for parents through a Medicaid waiver. That meant we had no access to caregiver support. No child care center would take her because of her disability, so I was left in the stressful situation of trying to patch together child care with family and friends. 

 After we moved to Arizona in 2007, we were able to find Hannah a personal caregiver through the federal funding provided to the state. That was life changing.  

 Hannah and her caregiver are together after school, while my husband Craig and I are still finishing our work days. The caregiver works with her 20 hours a week on “habilitation care,” which aims to help Hannah improve her daily skills to function independently. This includes practicing things like hygiene and goal-setting. I see our caregivers as part of our family, honestly, and they’re essential to all families who have children with medical complexities.   

We still have such a long way to go with disability rights. There were so many years when disabled children weren’t treated as human. Mothers  especially those with disabled children do not want to leave their loved one unless it’s 100% safe. It’s so important that the community has more options than institutions. Home care ensures that moms know who exactly is working with our child and that the environment is fully equipped for our children.  

 Unfortunately, the home care industry is significantly underfunded, and the number of home care workers doesn’t come close to meeting the demand for their services. 

 Meanwhile, caregivers are so poorly compensated that many have to work long hours just to make a living. Care workers earn just $17,200 a year on average. Of the 2.8 million home care aides across America, very few receive vacation pay or sick hours. On top of all that, many caregivers deal with challenging cases that they don’t have training or support to handle. As a result, a lot of them get burned out and end up leaving the profession.  

When I heard about President Biden’s plan to invest $400 billion in home care, which will improve workers’ wages, benefits, and training, I was elated. If this bill passes, it will create almost 14,000 jobs in Arizona. Our senator, Kyrsten Sinema, is a key vote on the measure. She must vote to pass it, for the sake of Arizona caregivers, working families, and children with medical complexities.   

I remember what it was like when we didn’t have access to caregivers for Hannah. If that’s not your reality, it’s easy to pretend it’s not a big deal. Hannah is a child of God. She was born the way she was supposed to be.   

My goal is to help others see Hannah as a person who could be someone in their life.  

Anyone can become disabled at any point in their life. Would you want your mom or daughter to be without access to the daily care they need? I hope that sharing our family’s story will help people understand the need for investing in home health care.  

Courtney lives in Queen Creek with her husband, her daughter Hannah, and Hannah’s brother and sister. 

 

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