Theresa Moore has a mantra when it comes to living with a disability.
“I’m still here,” she said recently. “I’m still here.”
Theresa, 47, was diagnosed with diabetes when she was just 14. In 2004, complications from diabetes caused damage to her eyes, resulting in disruptions to her life.
“I lost sight in one eye,” she said. “Then I lost sight in my other eye. I lost my job. I lost my husband. Then I had to move, so I lost my house.”
Just three months separated her initial and complete vision loss. Her loss of vision led to a lot of changes for her and for her family, not the least of which was needing assistance around the house. Finding the Consumer Directed Services (CDS) program at Paraquad helped to ensure that Theresa had the help she needed to continue to live independently.
CDS enables people who qualify for Medicaid and have a disability to hire and direct personal care attendants of their choice. The program helps participants live at home and be productive members of society.
Theresa’s personal care attendant provides up to 21 hours of assistance weekly, including transportation to the bank and grocery store, reading mail to her to ensure all bills are paid and paperwork for benefits is completed in a timely fashion, keeping her apartment tidy and clean, doing the laundry, cooking meals and taking out the trash.
However, due to changes in Missouri’s program, Moore is targeted to lose those services, as well.
Calling it a “gimmick,” Gov. Eric Greitens recently vetoed House Committee Bill 3, a bipartisan measure to fund CDS and other in-home care services. The veto will restrict access to in-home services for people at either end of the spectrum of severity of need. For example, Theresa scores a 21 on the “Level of Care” assessment; the veto raises the score needed to qualify for services to a 24. With the new limits, she does not qualify as being disabled enough to receive services.
“When I hear the governor saying, ‘It’s a gimmick,’ it is not,” Theresa said. “And I think most of us who have become disabled throughout whatever actions want to be as independent as possible for as long as possible.”
At the other end of the spectrum, people with the most significant care needs are also targeted. People who have intensive personal care service needs will be limited to three hours and 45 minutes of assistance per day. Previously, the maximum was six hours. Many people are wondering how they will secure the assistance they need to get out of bed, eat, use the restroom or get ready for work.
If Theresa loses her personal care services, she isn’t quite sure what she’ll do. She considers herself lucky to have a strong family support system, though, at best, relying on family would mean she would have less control because she would have to work around their schedules. At worst, she fears the assistance won’t be sufficient and she’ll lose her independence.
“If my health deteriorates, the end result is that I’ll have to live in a nursing home. And I don’t want to do that,” Theresa said. “And I definitely don’t want to do that until it is truly my last resort.”
For now, Theresa said she’ll maintain her positive perspective by laughing, which she does freely, sometimes even at her own expense.
“I think that’s why I’m still here!” she said.
She’ll keep going to Health and Wellness Center at Paraquad, where she enjoys the camaraderie while improving her health. She’ll also continue her volunteer work, which includes presentations to elementary schools during which she emphasizes how she does the same things that the students do, with some adaptations.
In short, she’s not giving up her independence easily, despite the challenges she might face.
“The one thing I know I’m going to do is I’m still going to be here.”
Kevin Condon is the Director of Marketing and Public Relations at Paraquad. He can be reached at firstname.lastname@example.org.