MRDD Mother lobbies to change system

Parents and guardians of special-needs children will meet Feb. 2 in Howland.
By WILLIAM K. ALCORN
VINDICATOR HEALTH WRITER
JOHNSTON -- Marilyn Ellis-Gualandi has come full circle in her battle to get help caring for her profoundly retarded son, Randy.
For years, she fought to get Randy into a state-run facility to get services.
Finally, when he was 9, she was unable to control him any longer and just packed up his clothing and dropped him off at Fairhaven School for the mentally retarded in Niles, essentially abandoning him to the authorities.
She got guardianship of her son back in 1995. Then, two years ago, upset with what she perceived as a lack of adequate and appropriate services at group home facilities operated by the Trumbull County Board of Mental Retardation and Developmental Disabilities, she brought Randy back home.
Today, Randy, now 20, who functions mentally at the 1-year-old level, is living in a specially adapted trailer attached by a deck to the Ellis-Gualandi home, where he gets 24-hour-a-day care and follows a living and behavior schedule that his mother developed.
The schedule is dynamic in that it changes as Randy meets goals. It really is a system of goals and rewards, she said.
Now, it's Randy's future, as well as his treatment regimen, that concerns Ellis-Gualandi.
What she wants
She wants to take care of Randy herself, believing she can do a better job than agencies hired by Mental Retardation and Developmental Disabilities. She also wants the Medicaid money now going to MRDD contract agencies to come to her.
The provider agency gets about $140,000 a year to provide health care and safety for Randy, and pays its employees $7 to $8 per hour, she said.
Ellis-Gualandi thinks if she got just half that amount, she could do a better job hiring and training staff, pay them better, and provide her son the continuity and care he needs.
"We, as parents, can provide the best services at home for a lot less money than what Medicaid is issuing to the counties," she wrote in letters to elected officeholders and Medicaid officials.
Ellis-Gualandi thinks there are many other parents in much the same situation. She wants them to organize so their voices will be heard by Medicaid at the state level, which provides money for MRDD.
Parents meeting planned
To that end, she has invited parents of special-needs children and guardians from six counties -- Trumbull, Mahoning, Ashtabula, Summit, Portage and Geauga -- to a meeting from 6 to 8 p.m. Feb. 2 at Blessed Sacrament Church, 3020 Reeves Road, Howland.
In addition, she has invited elected state officeholders and officials from the Ohio Medicaid office to the meeting, believing they are the ones who need to hear parents' concerns for when they are considering rule changes.
Douglas Burkhardt, Fairhaven superintendent, said mechanisms are in place that would allow Ellis-Gualandi to directly receive Medicaid money to care for Randy.
Burkhardt said she will be eligible to get Medicaid funds as Randy's caregiver herself when he is 21, which is less than a year away.
Also, Burkhardt said, the law may be changed as soon as March, lowering the eligibility age from 21 to 18, which would allow her to become his paid caregiver right away.
Finally, Burkhardt said, Ellis-Gualandi could get a guardian appointed for Randy, who could then hire her as his caregiver.
Pilot program
Burkhardt said Trumbull County MRDD is conducting a pilot program under which four client families receive a budget they can spend any way they want for the retarded person in their care instead of MRDD's dictating treatment.
Ellis-Gualandi said she has heard about the program and wonders why she was not chosen to participate.
Burkhardt explained that the money spent on care for Randy exceeds the financial cap for each family. Placing Ellis-Gualandi in the program would have resulted in her getting less assistance than she is getting now, Burkhardt continued.
Randy was born with a chromosome deletion known as Angelman Syndrome. He walks, but he cannot talk and needs total eyes-on care 24 hours a day. He also has pica disorder, which means he will put anything into his mouth, Ellis-Gualandi said.
Many avenues were tried for Randy, including public school and the Fairhaven School, where she said he was totally out of control.
Making progress at home
Randy has not cried since he came home and is learning to do simple tasks, such as pull down his own pants when he goes to the bathroom.
Because Randy is nonverbal, she uses digital pictures of various activities, such as eating, drinking and watching TV, to communicate with her son, and he with the rest of the family, Ellis-Gualandi's husband, Kevin Gualandi, and her daughter, Chelsea.
Right now, Randy goes to Fairhaven School from Monday through Friday, but he can attend only until he is 22.
"We're trying to plan for when Randy is done with school. He has to do something," she said.
"My anger is that MRDD did not listen ... and he lost the most important learning years of his life, when he might have picked some things up.
"Hopefully, if parents and guardians present ourselves as a group, Medicaid will put pressure on the county and state MRDD to do their jobs and provide the services they were put in place to do.
"Most parents want to take care of their kids, and the kids want to be home, but it's not an option, she said.
alcorn@vindy.com