OVERLAND PARK, Kan. — Mark Barrett first became acquainted with Roger Rector in the ’70s while working as his accountant.
As time went on, the two friends saw each other from time to time, but gradually became more distant. When Roger was diagnosed with Parkinson’s disease and things took a turn for the worse, Mark made Roger a promise to take care of his disabled son.
“When Roger died, he died right after I told him we’d take care of Scotty. So that’s what we’re doing,” Mark said.
Mark and Marsha Barrett began taking care of 51-year-old Scotty Rector after his father died in April. Scotty is legally blind and mentally disabled.
“We assumed Roger had made plans for what was going to happen to Scotty, but that wasn’t taken care of,” Marsha said.
Scotty lived with his grandmother in Florida for a majority of his life. His grandmother was his primary caregiver until she died when he was 41 years old.
Marsha said without any living family members to help support Scotty, they arranged for him to live with them. Without access to a day service provider Scotty goes to work with Mark several days a week.
Scotty sits at a desk occasionally doing small tasks like making coffee and shredding paper, but Mark said he doesn’t feel it’s the most appropriate place for him to be during the day. He would prefer Scotty be in a place where he can engaged in activities with other people with developmental disabilities.
“I just help out with what I can do,” Scotty said.
Marsha said finding a group home or assisted living arraignment that can meet Scotty’s needs is their top priority.
In order to qualify, Marsha said she enrolled Scotty in KanCare and had him complete a functional assessment. She said she’s gotten guidance from the Johnson County Community Developmental Disabilities Organization (CDDO), but still has a long way to go to get Scotty the resources he needs.
“Every day I have five documents, booklets, something I have to read, respond to, notarize,” Marsha said.
Before Scotty can receive assistance, the Barretts must help him apply for intellectual and/or developmental disabilities (I/DD) waiver from the state of Kansas.
Medicaid-funded I/DD Home and Community Based Service (HCBS) waivers can be used to cover the cost of housing, in-home care or tuition for a day-service program to help the individual develop social skills, continue their education or begin job training.
Kansas is facing a backlog of I/DD applications that’s preventing people with disabilities from gaining access to the services they need.
“The people that we’ve talked with want to help, but there is so much red tape it goes very, very slowly,” Mark said.
In Kansas, there’s a nine-year waitlist for I/DD funding. Officials from CDDO estimate there are more than 4,500 people waiting on I/DD waivers statewide, including more than 800 people in Johnson County.
That backlog is leaving people with limited options for support services.
“This can’t go on forever. It’s not going to happen. Something is going to break in our system, because we are running night and day,” Marsha said.