Each colorful page adorning Executive Director Brooke Kendrick’s wall tells a powerful story inside NorthEast Independent Living Services (NEILS).
In their own words, consumers with (NEILS) shared what would happen to them if state legislators moved ahead with potential cuts to in-home and consumer-directed services (CDS) statewide. Kendrick said CDS programs are frequently offered by NEILS staff, assisting consumers with what they need so they can stay at home instead of a nursing home. Each person’s story reflects NEILS’ goal of encouraging them to serve as their own advocates, and copies have been sent to state legislators as a reminder of the faces behind the stories.
"At the state level we’re obviously looking at some major budget cuts, and one of the targets that both the Governor and several of the legislators have had is home care services," Kendrick said.
Two changes have been proposed: a 60-percent cap for home care services, bringing the amount of available funds to 60 percent of what is available for a resident of a nursing home; and changes to assessment qualifications for receiving home care services or retaining it. Initially, plans focused on making the two lowest scores to determine a person ineligible for services, accounting "for a huge portion of individuals," Kendrick said.
Kendrick stressed that the assessments are "very subjective," and NEILS staff members found about 15 consumers who could receive higher scores. She also said that scores vary based on the assessor. NEILS embarked on a journey that would ensure consumers’ voices were heard in Jefferson City.
NEILS staff identified consumers who could see a reduction in the hours of care they receive or be cut from receiving care altogether, reaching to about 49 people. Kendrick noted that some people could be affected in both ways.
"We asked each individual to narrate their story, as if they were telling their legislator," she said.
Staff members transferred hand-written letters and recorded interviews to the colorful pages — sending copies to each person’s representative, senator and Governor and forming a wall representing self-advocacy — a core service offered at NEILS.
The personal stories were accompanied by a letter from Kendrick asking recipients to hang the documents along halls, in offices and other parts of the Capitol building. NEILS joined 21 other independent living centers in Missouri who shared their stories through letters, videos and pictures.
The House of Representatives recently approved their budget, keeping the assessment score provision unchanged but retaining the 60 percent cap for recipients of consumer-directed services.
"We’ve made an impact at the Capitol," Kendrick said.
Kendrick said the Senate is working on the budget, and NEILS representatives have been in constant contact with legislators to stress the importance of keeping funding for consumer-directed services at the current monthly level of $3,174.28 for nursing care. She said some of the people with the greatest needs could witness a drop in the hours of care they receive.
"If they’re willing to spend this amount of money on nursing home care, why not spend the same amount of money for someone to live in their own home?" Kendrick said. "They pay taxes, they’re buying goods, so on and so forth, and they lose that tax revenue when someone goes into a nursing home."
Kendrick said there is a potentially large number of care providers who could lose their jobs if eligibility and price caps go into effect, and the Hannibal Nutrition Center’s home-delivered meals are based on the same assessment point scale that determines consumer-directed services eligibility at NEILS. But as the wall of personal stories demonstrated, each advocate is making a difference.
"Not only are we a home care provider, but more importantly, we are a center for independent living. Our ultimate goal is we want to empower people with disabilities and make sure that they are given as many options and assistance as necessary to remain living in the community," Kendrick said. "The last thing we want to see is people institutionalized unnecessarily when they could be living at home on their own."
Kendrick said NEILS representatives will continue to keep on top of legislation at the local, state and federal levels. And the staff members have a growing group of advocates who are eager to let their voices be heard. Independent Living Director said the consumers’ personal stories portrayed why they needed the services they received and that "they’re not just a statistic or a number that they’re trying to cut from." Kendrick agreed that the stories and advocacy continues to make a powerful impact.
"That alone is empowerment, the fact that they can tell their story and make other people listen. Some of those stories up there, they would bring tears to your eyes," Kendrick said. "They’re incredible."
Reach reporter Trevor McDonald at email@example.com