Disabled in accident six years ago, Lake Katrine man advocates for community services
By Ariel Zangla, Daily Freeman
LAKE KATRINE >> It has been about six years since Keith Gurgui suffered a spinal cord injury in a diving accident that left him a high-level quadriplegic.
Since his accident, which changed his plans for the future, Gurgui has become an active advocate for other people with disabilities and a supporter of research into regenerative medicine. The 24-year-old, who lives with his parents in Lake Katrine, works part-time as a systems advocate for the Resource Center for Accessible Living in the town of Ulster and is a board member with the New York State Spinal Cord Injury Research Program. He also recently went to Washington, D.C. to attend the National Council on Independent Living’s annual conference, which this year celebrated the 25th anniversary of the federal Americans with Disabilities Act.
While at the conference, Gurgui spoke during a rally and march on Capitol Hill. He said he spoke briefly about how important it is for people with disabilities to live in their community, rather than being segregated in institutions. He also spoke about how important it is to invigorate young people with disabilities and teach them not to worry about potential failure.
Gurgui said the conference focused on young people who grew up with a disability but after the passage of the Americans with Disabilities Act. He said the conference took a look at their lives to see if there were gaps in the law. The National Council on Independent Living also was advocating during the conference for legislation called the Community Integration Act, as well as additional funding in the federal budget to support nationwide independent living services, Gurgui said.
“We want home and community-based services over institutional or nursing home care,” Gurgui said. He said the proposed law would require states and insurers that provide long-term services and supports to provide home and community-based services to individuals they cover.
It would also require those same states and insurers to offer such services to people currently in institutions. The Community Integration Act would amend the Americans with Disabilities Act to give those with disabilities the right to receive community-based services over institutional ones, where appropriate.
“If it wasn’t for RCAL (Resource Center for Accessible Living) or the Medicaid waiver I’m on that made my house accessible, I’d probably be in a nursing home,” Gurgui said. “Since I’ve been home, I have a job as a systems advocate.” He also received his associate’s degree and plans to go back to college, likely at SUNY New Paltz, once the grant for his systems advocacy job expires. Gurgui said he would likely study pre-law.
Gurgui had graduated high school and was on a summer vacation with his family prior to beginning studies at Philadelphia University to become a physicians assistant when his accident occurred. Now, as a systems advocate, Gurgui works with a network of advocates across New York to educate local and state policymakers on the consequences and impacts of disability and civil rights policy. His main area of focus has been on electoral reform.
“We try to emphasize these are the things that people are able to do when they’re in the community,” Gurgui said. He said home and community-based care is also cheaper for the state. Gurgui said it is his understanding that New York spends the most money on institutionalized Medicaid recipients and gets the least results.
On top of participating in the march and rally, Gurgui spent time during the conference in meetings with representatives of U.S. Rep. Chris Gibson, R-Kinderhook, and U.S. Sens. Charles Schumer and Kirsten Gillibrand, both Democrats of New York. He also took part in a workshop where he, along with other members of the Election Reform subcommittee for the National Council on Independent Living, made a presentation on the 2016 electoral landscape. Gurgui said he talked about the voting demographics and the change in voters with disabilities versus those without in the 2000 election compared to in 2012.
It was also at the conference where Gurgui received a regional advocacy award in recognition of his ongoing work.
“I was honored,” Gurgui said. He said the award recognized his advocacy work, which predominantly focused on voting rights. He said he has done a presentation on the ballot marking device, which is an accessible machine people with disabilities can use to vote in federal elections. Gurgui he has also spoken with nursing students at Ulster County Community College to give them a perspective on people with disabilities in home care and has testified for governmental agencies when they ask for input on policies.
While the trip to Washington was an opportunity to speak on issues important to him, Gurgui said it was also a chance for him to travel without his parents since his accident. He said he has medical needs his personal care attendants cannot handle, so his parents have always taken care of that because they are both registered nurses. For his trip to Washington, the Bruderhof Community was able to provide two people to travel with him, one of whom was a registered nurse, Gurgui said.
“So the big deal is I was able to go on a trip by my own, without my parents,” Gurgui said. He said that was a big step in his own evolution toward independence. Gurgui said he is also thankful to the National Council on Independent Living, which also gave him a $1,200 scholarship to help cover his travel expenses, as well as to the New York Statewide Independent Living Council, which provided him with a $250 scholarship for his trip.
“I’d like to inspire other people to get out if they can,” Gurgui said. He said he wants policymakers to know there are a lot of people with disabilities who cannot get out and he is one of their voices., Executive Director executive