CINCINNATI – Diana Mairose’s office cubicle at the Hamilton County Developmental Disabilities Services building in East Walnut Hills is like most anyone’s workspace. There is organization among the chaos of photos, personal mementos, files and her computer.
But for Mairose, there’s actually more organization than chaos, including a handy contact list of local and state officials pinned to a wall.
Mairose, 37, is an advocate with the HCDDS and has put that list to good use over the eight years she has worked there. The perspective and passion of her advocacy is personal. She was born with Noonan Syndrome, a genetic disorder that can affect various portions of the body but in many cases is characterized by short stature, heart defects and possible developmental delays. Mairose has undergone an operation to repair holes in two chambers of her heart and still deals with good and bad days when it comes to her balance. But she has been fortunate in her life, she says. Her family accepted her for who she was and did everything possible to give her the opportunities to find out who she could be and who she wanted to be.
Mairose wants everyone to have that kind of opportunity.
“A lot of people with developmental disabilities, they’re just a person. They have interests, talents, passions and they like to learn. It might be in a different way but we still do it,” Mairose said. “I don’t focus on my disability. It’s just a part of me. But it also lets me learn and educate others. I do my advocacy work not just for me. I do it for people I don’t know. I do it for my friends. I do it for people who are not sure what to do next.”
The Ohio Department of Developmental Disabilities and its 88 county offices, according to a recently released report by United Cerebral Palsy, has steadily improved the past decade at fulfilling its mission of integration for all people with developmental disabilities.
Since 2007, UCP has produced “The Case for Inclusion,” an annual ranking of how well states utilize their Medicaid programs while serving people with intellectual and developmental disabilities. The report doesn’t concentrate on the amount of Medicaid funds spent; rather, it focuses on how effectively that money is used in five areas of concern:
*Promoting independence.
*Tracking health, safety and quality of life.
*Keeping families together.
*Promoting productivity.
*Reaching those in need.
Ohio was ranked 48th in the initial report. This year’s report ranked Ohio No. 10.
“We’re excited that UCP recognizes our efforts, but it’s not about a ranking, it’s about meeting the expectations of individuals and families,” said John Martin, director of the Ohio Department of Developmental Disabilities. “Individuals want to be active members of their community, and parents want more for their children. The No. 10 ranking is a reflection of how we’ve all moved our system forward to meet those expectations.”
This year is the 25th anniversary of the Americans with Disabilities Act. The federal legislation prohibits discrimination and ensures equal opportunity for people with disabilities in employment, state and local government services, public accommodations, commercial facilities and transportation.
Enacting a law is one thing. Enforcement is an on-going process. Seeing real change requires perseverance. It wasn’t until 2009 that Ohio changed the department’s official name from the original Mental Retardation and Developmental Disabilities. Mairose spoke at the state legislature then as part of the effort to get the name changed. She was also the driving force behind getting the term “handicapped” removed from the familiar blue accessibility signs first in Hamilton County, then in the city of Cincinnati and then, last December, throughout the state through legislation endorsed by former state Sen. Eric Kearney.
That’s just one example of subtle change that’s aimed at the overall mission of inclusion.
“In our field, historically, we tried to fix people and we really had a medical model by saying what are your deficits and we’re going to work on that as goals. Now we’re trying to see people where they are and what do they like to do,” said John Romer, director of advocacy support at HCDDS. “I think generally it’s a better, progressive move where just a few generations ago we were hiding people in their own homes or away in state institutions. That’s what families were told to do.”
HCDDS Superintendent Alice Pavey has just announced the board’s decision to consolidate its four adult centers into three by March 2016. It’s a change driven by various factors, including compliance with ADA regulations as well as Gov. John Kasich’s Employment First Initiative, which makes job training and community employment a priority for people with developmental disabilities.
It’s not an easy change, Mairose said, but no one is seeking a handout. What developmental disabilities advocates are seeking are opportunities at life.
“The fact is self-determination. Not everybody has it, but through training, through experiences, through life experiences, through ‘Do I really want to do this?’ that’s where we need to start,” Mairose said. “You have to start with the person.”
