Sangha Unity Network planning session emphasizes disabled individuals' public policy needs

Self-advocacy conference comes to Cartersville

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John McCarty, 23, slides his fingers across a laminated alphabet. His mother Joan refers to it as her son's "letter board" — it's his primary means of communicating with the world around him.

That simple sheet of paper has proved so important to the McCarty family that they celebrate each Nov. 8 — the day they first started using the low-tech tool — as their son's "Day of Freedom."

"A person with a disability is no different than you," he spells out, gently poking each letter one at a time as if he was operating a touchscreen keyboard. "We all need the same things."

The Roswell, Georgia, native has severe autism. With assistance from his mother, he helped guide attendees at Thursday's Cartersville Self-Advocacy Network Planning Session at the Clarence Brown Conference Center through PowerPoint presentations.

During those presentations, he extolled "wheel power," an eight-pointed model touching upon matters like home life, creative expression and neighborhood and community membership as means for individuals with intellectual and developmental disabilities to "self-advocate" for their own interests.

"I'm going to continue to get paid to present and I hope to get support to live independently," he communicated. 

He embodies everything event organizer Sangha Unity Network (SUN) champions. The nonprofit organization seeks to promote "community inclusion" for individuals with disabilities, with an emphasis on addressing their policy issues and support services needs.

"We have a grant from the Georgia Council on Developmental Disabilities to provide support and development for a self-advocacy network in the state of Georgia and in local planning areas," said SUN Executive Director and Owner Michelle Schwartz. "Within that grant, the state was divided into four quadrants and for the northwest sort of area of the state, Cartersville was the place to go." 

She summed up "self-advocacy" as the ability to stand up for oneself and his or her rights. 

"It's really important for the community to understand that individuals who experience intellectual or developmental disabilities, or any physical disability, have the same rights as everyone else," she said. "For me, it's the civil rights issue of our time."

She said the organization's big goal for 2018 is developing a statewide, grassroots network that will allow self-advocates to develop their own local supports and work towards policy changes. That includes addressing the transportation, employment and housing needs of Georgians with disabilities. 

As Schwartz explained, however, the group is also striving to change public perceptions on what those with disabilities are actually capable of doing on their own.

"They really want access to their community and opportunities to contribute and develop their own social, valued roles — that need is everywhere, in all counties in Georgia," she said. "People want to be able to live in their own homes, and frequently, they don't have opportunities to do that."

That's something Pat Petrone Walczak, 63, of Kennesaw, knows all too well. Her daughter Madeline was oxygen-deprived in the womb and was born with brain damage. Today 42, she has the intelligence level of a 5-year-old child.

Walczak said her daughter was bullied while taking special education classes, and later by her alleged "caregivers" in group homes.

"A great deal of the population assume that people with intellectual or developmental disabilities have no value," she said. "They just assume the right thing to do is put them somewhere where they will be cared for and that providing a shelter and food is 'caring for.' Basically, that imprisons them." 

She recalled her daughter's experiences in a group home, where she lived with four other women. Instead of promoting independence and self-sufficiency, Walczak said the program aspired to make her daughter more co-dependent. 

"If one of them had a doctor's appointment, all four had to go stay at the doctor's  office all day," she said.

Today, however, Madeline is fighting to have her voice heard in public policy decision-making. She serves on the Georgia Council on Developmental Disabilities and recently returned from a trip to Washington, D.C.

"She told her stories to senators and representatives in our Congress," Walczak said. "That's what a self-advocate does. They go and they tell their story and talk about how things are and how things can be."

An extremely important topic, Walczak said, is the obtainability of Medicaid waivers for individuals with disabilities.

"The state only funds about 70 waivers a year, and there are 7,200 people on the waiting list," she said. "And a lot of those people have aging parents, such as myself, and when we're no longer here, how and who will care for our loved ones?"

Not that even being eligible for Medicaid is sometimes enough to get Georgians with disabilities the services they require, she added.

"Most of them have to apply for Social Security, [Supplemental Security Income], and they're making that more and more difficult to prove you're disabled. With SSI comes disability, then comes Medicaid, it automatically comes. But that's just Medicaid for health care, and there are so many doctors that will not accept Medicaid."

She's heard plenty of tragic stories. She recalled one man with cerebral palsy being taken out of a host home setting and placed in a nursing home.

"He was dead in three months — less than three months," she said. "That's the issue."

Schwartz, however, said Medicaid waiver accessibility isn't necessarily the crux of the problem. 

"The real issue is how waiver services are written to support the self-advocate movement, so people actually have a voice in what their day looks like," she said.

Still, she said she is concerned by the state of health care accessibility for disabled Georgians in general. 

"We don't have medical providers who will accept Medicaid waivers [and] we don't have medical providers who believe that people who use nontraditional communication methods have capacity to make their own decisions for their health care," she said. "People who experience disabilities have rights and have capacity. And just because you don't use typical communication doesn't mean that you cant make your own decisions."

And that, Walczak said, is what the self-advocate movement is all about. 

"My daughter actually is realizing her dreams. She has affiliated herself with various agencies," she said. "I would like to see more people have that opportunity, to have the life they want to live and not the life their parents or caregivers choose for them."