HOWLAND Parents to MRDD: Help us

There is a group that advocates on behalf of people who are mentally retarded.
By WILLIAM K. ALCORN
VINDICATOR HEALTH WRITER
HOWLAND -- About 50 local parents and guardians of people with mental retardation and/or developmental delays took a step toward presenting a united front in demanding more help from state and county MRDD officials.
"I think they found out they are not the only ones having problems," said Marilyn Ellis-Gualandi, who organized a meeting for the parents and guardians Monday night at Blessed Sacrament Catholic Church here.
"We all have the common ground of having a loved one who is special, and we have been given the job of raising them," she said.
Ellis-Gualandi's son Randy is no longer a child, but is a profoundly retarded 20-year-old who functions mentally at the 1-year-old level. Randy lives in a specially adapted trailer attached by a deck to the Ellis-Gualandi home. Randy requires 24-hour-a-day care, for which the state pays about $140,000 a year, Ellis-Gualandi said.
'I've had it'
"The reason I'm here is I've had it" fighting the system alone, Ellis-Gualandi said.
"There should be services and people out there to help us. We don't need to be given a hard time," which she said is what she has received from the county and state Departments of Mental Retardation and Developmental Disabilities.
She said officials have been unresponsive to her complaints that a group home in which Randy lived was inadequate and unsafe.
She also has been unsuccessful in having herself designated as Randy's caregiver so she could receive money from the state to hire and train caregivers, which she believes she can do better than the contract agencies supplying caregivers to her son.
Gary A. Tonks, executive director of Association of Retarded Citizens of Ohio, said what Ellis-Gualandi is talking about is a concept called self-determination, or self-direction, and it already exists under state law.
"Self-determination is the way it's supposed to be," said Tonks.
He urged parents not involved in ARC to join the group to stay informed and be kept up-to-date with correct information about pending legislation and laws that have been passed.
ARC, which is 50 years old, is a national, parent-based organization that advocates for people who are mentally retarded and/or developmentally disabled. It has chapters in Mahoning and Trumbull counties, but several people in the room said they had never heard of ARC and wondered why they have not been contacted.
Tonks explained that ARC does not have access to their names because of privacy laws, so people have to contact the organization.
"We have to use one organization. ARC is established in Columbus. Many parents don't know which doors to knock on. We do," Tonks said.
Also, Tonks said, parents have to know their rights and have to be politically active. Elections are coming up for county commissioner. Sound out the candidates and support the ones who support the interests of people who are mentally retarded, he added.
Officials represented
Most of the elected officials invited to the meeting did not attend. In attendance, however, were state Sen. Marc Dann of Liberty, D-32nd, and a representative for U.S. Rep. Tim Ryan of Niles, D-17th.
"It is unacceptable to me that any of our constituents are treated in the way you have described," Dann told the group.
He recommended parents and guardians first work locally to resolve their problems.
But, he said, "If that doesn't work, call ARC. And if that doesn't work, come to us. I won't hesitate to get on the phone and call the county MRDD superintendent, the MRDD board members and the county commissioners who appoint the MRDD board members."
"If it is serious, and it involves harm to your child, get a lawyer and sue. Providers need to know they can't get into this business on the cheap and make money at the expense of clients," Dann said.
"The communications can't get any worse. I hope we'll all work together, through ARC or something else," Ellis-Gualandi added.
alcorn@vindy.com