|
Kenny Deal visits with his sister, Pat Trotter, in her home
Kenny Deal, who is developmentally disabled, stays for now in a local assisted-living center. His sister, |
After decades apart from her brother, Pat Trotter was surprised to discover he lived in an apartment by himself in 2003.
Kenny Deal has about six days' worth of school, can't read and has an IQ of 47.
He can print his name--a feat he takes great pride in.
"He'll sign his name on anything," Trotter said.
And in 1999, he signed his name on a lease of a Culpeper County one-bedroom apartment, which he got with help from a Section 8 housing voucher.
Trotter came back to Virginia after living across the country for years. She found her brother's apartment, a block off Main Street in Culpeper, and hoped for a joyful reunion with him. But when he opened the door, the smell took her breath away.
The bathtub was black, and a colony of roaches had moved in to Deal's bed.
His cooking skills consist of using a microwave on highA power only because he can't read the instructions on the back of a box.
But Trotter was even more horrified to see neighbors in and out of Deal's apartment, stopping by for money, food, sodas and favors. Deal said "yes" to any request.
When Trotter asked why, he said, "They're my friends."
He sees everyone as an immediate ally, Trotter said. "He will give away his last dime if someone asks for it."
Deal worked part time, doing odd jobs at a nearby park. He showed up at work to find hand-drawn pictures of his chores, so he'd know what to do that day. Deal said he loved his job.
When Trotter moved back to Virginia, she became one of thousands of state residents trying to navigate the issues of long-term care for the developmentally disabled. She tried to help her brother deal with day-to-day living and the more complicated issues of finding a permanent home.
She immediately threw out his furniture and the roaches living in it. She moved her brother to a new apartment and hired a cleaning crew. She lives in Spotsylvania County and drove 30 minutes twice a week to help him with laundry, groceries and errands.
She also took Deal to a doctor, who discovered a heart condition, which had previously been diagnosed but had gone untreated. Deal would need surgery. He would have to give up his job and he'd need more supervision.
Trotter got Deal into an assisted-living center closer to her home in the fall of 2005. At first, his savings paid the costs. He had Medicaid, but that wouldn't pay living expenses. She tried to find a grant, only to find out he was ineligible because he made too much money from his disability payments.
Trotter learned about the Mental Retardation Medicaid Waiver, which pays for services--including housing--for people with retardation. Because Deal's parents are elderly and Deal, 54, is in danger of becoming homeless, he is considered an urgent case to get the waiver.
So are 1,871 other people in Virginia. Each year, the General Assembly appropriates money for about 300 new waivers.
Local community services boards determine who gets the waivers.
Trotter went to the Rappahannock Area Community Services Board, where her brother was placed on a waiting list with several other area people in dire situations.
Deciding who gets the waiver slots is a heartbreaking process, said Linda Wilson, director of case management with the RACSB. Sometimes a slot opens up because someone dies or moves to another state.
"We're glad to have one slot open up, but we're not glad that to have just one slot," she said.
All of the case workers get together and plead the cases--they're often like Deal's--people with disabilities who can't live on their own and whose families can't take care of them.
Every one is desperate, Wilson said. Case workers have to boil it down to the most basic concerns: health and safety. Who is in the most unsafe conditions? they ask.
For now, Deal is at the assisted-living center, where he runs weekly movie nights, plays bingo twice a week and helps push wheelchairs at dinner time.
He still sees every one as his friend. Deal's quick with a smile, a handshake and an invitation to bingo. He gets up in the middle of the night to call for a nurse whenever he hears someone crying.
"He has sense of purpose now," Trotter said.
Deal shares a room with another resident who helps look out for him, and he's thriving in his new place. His favorite possession is an old photograph of him and Trotter as kids.
Deal said he's happy Trotter came back to take care of him.
But his housing situation is temporary. He's running out of money. Trotter works full time and has health problems. She also has an older husband and a small home. She can't take Deal in, couldn't supervise him the way he needs.
His contract at the assisted-living center is up at the end of the year, and Trotter knows she won't be able to afford to keep him there. She doesn't know if Deal will have a waiver by then.
She believes her brother has three options. He could somehow come up with the money to pay for the assisted-living center. An unrealistic option, she knows.
He could get a waiver, which wouldn't pay for the assisted-living center. The waiver would cover a group home or services in another home. Even then, Trotter would have to find such a place, which are scarce in this area.
Or she said he could "live under a bridge. I say this lightly--but it's not a joke at all--it's a looming possibility because he simply will not have a place to live."
Amy Flowers Umble: 540/735-1973| Group home shortage also leads to waits
This summer, the wait for Mental Retardation Medicaid Waivers will be over for 27 people on the urgent list. The Rappahannock Area Community Services Board just learned it will get that many waivers this year, up from six last year. There are 160 people on the RACSB's urgent waiting list right now. If Kenny Deal is one of the lucky ones, he still won't be out of the woods as far as his living situation goes. His sister Pat Trotter assumes he would then go on a list for a group home. The RACSB opens one group home a year. Each one houses about five or six people. The waiting list for these homes usually reaches about 150. And it usually stays there. As soon as a home opens, five or six more people always seem to join the list. Deal could live in an apartment, as he did in Culpeper, but with more supervision. The waiver would pay for additional supports and for daily care. But he would need Section 8 assistance to afford the apartment, and that also has a waiting list. --Amy Flowers Umble |
