Twelve years ago, Western New Yorker Renee Christian moved into her own apartment.
"It was scary and exciting, and nerve-wracking, all at the same time. I had a lot of supports around me at that time, I developed a big community of people that wanted to see me succeed," Christian said. She added that when she was moving into her first place, she was also doing advocacy work and was an active Americorps member
For Christian, moving into her own space opened a lot of doors to the life she wanted and she knew she could achieve. She says within three years of having a place of her own, she became a mother. She explained that she had always wanted to be a mom, and always believed in her ability to be a mom, but she said a lot of people doubted her.
"When I had my daughter, a lot of people said, 'You're not going to be capable.' Getting my daughter dressed is 20,000 times different when she was a baby... she's not anymore, she's not little... but when she was a baby it is 20,000 times different than dressing myself. It uses different motor functions, different skill sets, and everything like that. So to compare the two, you really can't. But people did it all the time," Christian said.
She also started a business:Journey Guide Life Coach. She said she helps people create a positive mindset for the life they desire and teaches others how to advocate for the life they want. Like any business owner, she has big goals for her business.
"I want to take it to a level that it's unstoppable, and we're making a difference in so many peoples' lives," Christian said.
But at the moment, Christian’s life is being severely impacted by a statewide care crisis that she believes could threaten her right to live in her community. Christian has cerebral palsy, and uses a wheelchair, but doesn’t need the level of care of a congregate setting.
In fact, she spent much of her life working to get out of congregant settings, after being placed in a nursing home around age 12, and then a residence at 16.
"Those places are good for some people, but this is my way to be able to choose the way I want to live my life and that's what the services were created for," Christian said.
History of Independent Living:
TheIndependent Living Movement, which arose as institutions began to be shut down in the 1960s, has focused on the right for people with disabilities to live independently in their communities and the right to self-determination.
Ed Roberts, an activist who is regarded as the founder of the movement, formed the first Center for Independent Living in 1972. According to the Northeast Independent Living Program (NILP), "The Center focused on assisting people with disabilities to live in the community with whatever supports they needed." This movement has led to advances in disability rights, and today over 400 not-for-profit IL centers exist in the US, that continue to "provide information, support and advocacy to support people with disabilities to live in the communities of their choice," according to NILP.
Christian has been allocated funding for almost 24 hours a day support staff, who assist with tasks such as getting in and out of bed, using the bathroom, cooking, and cleaning. Christian said the majority of the funding she is provided is for home health aides, but that low wages, which are created by state funding, are making it hard to find workers.
An average of 23% of home health and personal care aide positions are unfilled, according to the Home Care Association of New York State's 2021 report.
A CUNY Graduate Center Report estimated the median wage for an upstate home health care worker to be $12.76 in 2020. When she’s without staff, which is about two-thirds of each day, she often sleeps in her wheelchair or has to call her friend for assistance.
"I don't want to be that person blowing up your phone because I have to go to the bathroom. But I've become that person blowing up your phone because I have to go to the bathroom," Christian said.
Comparatively, the minimum wage in other sectors is higher —
fast-food work has already been set to $15 an hour, the state’s eventual goal for the minimum wage. Activists, including Christian, say that higher wages in other jobs make it difficult to attract and retain workers.
"It's so easy to get so much more money now that I think it's harder for people to value doing this," Christian said.
Self-advocates, agencies and families have been vocal for several months about the current wages of workers. Currently, the proposed Fair Pay for Home Care Act, or New York Assembly Bill A6329 and Senate Bill S5374, would increase home care wages to 150% of the minimum wage, which could increase the wage to $22.50, when the state minimum wage hits $15 an hour.
"If it was you and you had to go through what I'm going through every day? What would you want [workers to be paid]?" Christian said.
Christian acknowledges the support system has changed over the years, but she worries about this situation. Willowbrook State School, a state institution that was shut down in 1987 due to its abuse of people with disabilities, is still within memory for many.
“We can't go backwards. And if we continue to allow the absolute ignoring of what's going on... the, in my opinion, the perpetuation of 'this is not a big deal,' we're gonna end up going backwards to things like Willowbrook.”
Since speaking with Christian in October, a GoFundMe has been launched by one of her friends to help supplement what her home health aides can be paid while wages remain at the current level. She's also been video blogging about how this workforce crisis is impacting her daily life on her YouTube channel "renee's Journey."
Christian shared back in October what she hopes people will understand about how this is impacting her and her right to live in her community.
"I'm so much more than the supports I need, I have a business in my community that I run every day, I have a daughter that I take care of every day, like, I'm so much more valuable in my community than I would be somewhere else," Christian said.
She also hopes elected officials will take the time to hear stories like hers.
"Get to know them and put a face to the surface, put a face to the story. And that's why I want to do what I'm doing. That's why I want to reach out because I want you to realize that I have a face, that there's a real me, that I exist."
