I was about 9 years old and a very impressionable girl when my mother showed me how to treat someone who has intellectual and developmental disabilities. My mom was a Girl Scout leader, so we often held troop meetings at our home. One girl, Sandy, was “retarded” or “slow,” as we said in those days before we knew better.
Her speech was difficult to understand, and she came from a poor family. After each Girl Scout meeting, my mom would invite Sandy to have her hair washed and set in rollers; I still have a vision of Sandy sitting in our bathroom, and how mom lovingly washed and set her hair, telling her how pretty she looked. That mental image stays with me even today nearly seven decades later.
I am the mother of Monique, a 48-year-old developmentally disabled woman who lives in a Citrus County group home. The cause of her developmental disability remains “unknown,” but she has the mental ability of about a 3- or 4-year-old child, and very limited verbal communication ability. As a parent in my 70s, I worry every day: What will happen to my daughter after I become incapacitated or die? Her future would be bleak without adequately trained and caring direct support professionals, as well as day program availability and staff. Many aging parents in my position are asking themselves the same question.
My daughter has been living in a group home here in Florida for approximately nine years. About 45 percent of the staff has turned over. Imagine her anxiety when she returns from her day program to see a newly hired staff person. She wonders what happened to the staffer she knew, a caregiver whom she considered a member of her family. Especially at shower time and taking meds, she experiences high anxiety, as do many individuals with her level of understanding. Put yourself or your child in her place.
She had companion services for a time, but that person was no longer able to work at her position, and there are no companions available to fill that void. Thankfully, I am still able to transport her to Special Olympics and other social group activities such as Family and Friends Reaching for the Abilities.
Many nonprofit group homes and day programs, such as those run by the Association for Retarded Citizens (ARC of Florida), are strapped for cash, saying they have only six to eight months of reserves left to run their programs. Without significant funding earmarked for direct support professionals’ wage rate increases through the Medicaid iBudget Waiver (to provide home and community-based supports and services to eligible people with developmental disabilities), several will have to close their doors.
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Some of that funding comes from our Florida Legislature and is signed off on by Gov. Ron DeSantis. Legislative decisions are being made in the next two weeks about what funds will be allotted for staff wage rate increases through the Medicaid iBudget Waiver for Home and Community-based Services. We need to let our lawmakers and governor know the true numbers of those affected by their upcoming decisions, and that our citizens support funding for these individuals.
Federal law protects Americans with disabilities such as my daughter. The courts have said that unnecessary institutionalization is a form of discrimination under the Americans with Disabilities Act. And the Developmental Disabilities Assistance and Bill of Rights Act of 2000 requires that they “have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community.” But they will not have these rights if caregivers are underpaid. That’s why the Legislature must increase their pay to at least $15 an hour now to offer what a worker can already earn at Target or Amazon.
Institutionalization must remain in the past, yet there can be no opportunity for community inclusion without care. Inadequate funding is a violation of their rights as citizens of Florida and our great United States of America. Taking care of our most vulnerable citizens is not only our duty, but I consider it a privilege as a grateful citizen who has the ability to work and contribute to my state and my country — not only take care of my own child, but to contribute to the care of another. These individuals, their families and their caregivers have my greatest respect and admiration. But the caregivers have earned more than respect. They have also earned the right to a living wage that honors their work.
Marsha Shappell is an advocate for intellectually/developmentally disabled individuals who lives in Inverness. To learn more, visit the Florida Developmental Disabilities Council website, which describes their legislative platform as well as our kids’ personal stories. An additional source is The ARC of Florida’s website.