When it came to getting services for her 14-year-old son Nivek, who has a developmental disability, Melanie Dickson knew exactly what she wanted to do.
“I kind of just dove right into self-direction," Dickson said. “I can do the planning, and you could tweak it if it's not working out .”
For people with developmental disabilities, the state offers two forms of support—traditional and self-directing. The traditional approach encompasses group homes with group-daytime programming and activities. The self-directed services provide more flexibility and independence.
But the program has been underused by people of color locally, which prompted four agencies to launch an effort to get more families of color, like Dickson’s, familiar with the self-directed option.
Dickson, who identifies as Hispanic, works full time and is also trying to finish college. She said self-directed services gave her and her son the autonomy they needed although the initial enrollment process was a bit intimidating.
“Once you get past that it’s all worth it,” Dickson said. “It's more than what I would have ever expected or imagined...Honestly, I wish I knew sooner.”
Jeff Sinsebox, President/ CEO of Empower People's Independence, an agency that provides custom care and solutions for people with developmental disabilities, noticed during the COVID-19 pandemic that there were some inequities within the services provided by his agency.
“There seems to be equal choice and opportunity in group homes and day programs,” he said, “But it looks like there's a disproportionate number of people that are white getting the services in self-direction.”
To promote self-directing services to underserved families, Sinsebox used grant money awarded by The Golisano Foundation to collaborate with Ibero-American Action League and The Urban league of Rochester, NY — two minority-centered agencies, to get the word out to that demographic. Catholic Family and Community Services was also a partner.
Michele Suhr, Urban League of Rochester’s senior vice president for departments for developmental disabilities and family services, said the collaboration was a “huge win for people in our communities.” Suhr added she encourages families to be self-directed.
“I think it's the way it has to be,” she said. “ why wouldn't they be able to make their own decisions of what programming they want, what support they want, what fun things they want to do in the community, where they want to live, who they want to live...you and I make those decisions each and every day, why can't they?”
The collaboration between the agencies began two years ago and is scheduled to end next month.
Sinsebox said the outreach has been successful, and he will be presenting his plan and results to other state agencies-- so they too can make the changes.
“Sometimes the traditional system is the best fit for people, and sometimes the self-directed system is better for people, but isn't it great that people get to figure out which system is right, and they have access to all of it,” said Sinsebox.
